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  • 1.
    Bay, Annika
    et al.
    Department of Nursing, Umeå University, Umeå (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Burström, Åsa
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm (SWE).
    Holstad, Ylva
    Department of Nursing, Umeå University, Umeå (SWE).
    Christersson, Christina
    Department of Medical Sciences, Cardiology, Uppsala University, Uppsala (SWE).
    Dellborg, Mikael
    Department of Molecular and Clinical Medicine, Sahlgrenska University Hospital, Gothenburg (SWE).
    Trzebiatowska-Krzynska, Aleksandra
    Department of Cardiology and Department of Medicine and Health Sciences, Linköping University, Linköping (SWE).
    Sörensson, Peder
    Department of Medicine, Solna, Karolinska Institutet, Stockholm (SWE).
    Thilén, Ulf
    Department of Clinical Sciences, Cardiology, Lund University, Lund (SWE).
    Johansson, Bengt
    Department of Surgical and Perioperative Sciences, Umeå University, Umeå (SWE).
    Symptoms during pregnancy in primiparous women with congenital heart disease.2024Inngår i: Scandinavian Cardiovascular Journal, ISSN 1401-7431, E-ISSN 1651-2006, Vol. 58, nr 1, artikkel-id 2302135Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: As more women with congenital heart disease (CHD) are reaching childbearing age, it becomes more common for their symptoms to be evaluated during pregnancy. However, pregnancy-related symptoms are similar to those caused by heart disease. This study investigated the prevalence of factors associated with symptoms during pregnancy in women with CHD.

    Methods: The national birth register was searched for primiparous women with CHD who were registered in the national quality register for patients with CHD.

    Results: Symptoms during the third trimester were reported in 104 of 465 evaluated women. The most common symptom was palpitations followed by dyspnea. Factors associated with symptoms were tested in a univariable model; higher NYHA classification (>1) (OR 11.3, 95%CI 5.5-23.2), low physical activity (≤3 h/week) (OR 2.1 95%CI 1.3-3.6) and educational level ≤ 12 years (OR 1.9 95%CI 1.2-3.0) were associated with having symptoms. In multivariable analysis, low physical activity level (OR 2.4 95%CI 1.2-5.0) and higher NYHA class (OR 11.3 95%CI 5.0-25.6) remained associated with symptoms during pregnancy. There were no cases with new onset of impaired systemic ventricular function during pregnancy.

    Conclusion: Symptoms during pregnancy are common in women with CHD but are often already present before pregnancy. Because ordinary symptoms during pregnancy often overlap with symptoms of heart disease, it is important to know if symptoms were present before pregnancy and if they became worse during pregnancy. These results should be included in pre-pregnancy counselling and considered in the monitoring during pregnancy.

    Fulltekst (pdf)
    fulltext
  • 2.
    Bay, Annika
    et al.
    Umeå University, Public Health and Clinical Medicine, Umeå, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Lamas, K
    Umeå University, Nursing, Umeå, Sweden.
    Sandberg, Camilla
    Umeå University, Public Health and Clinical Medicine, Umeå, Sweden.
    Johansson, Bengt
    Umeå University, Public Health and Clinical Medicine, Umeå, Sweden.
    Facilitators and barriers for physical activity in adults with congenital heart disease2018Inngår i: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, nr suppl_1, s. 1120-1121, artikkel-id ehy566.P5433Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: A majority of adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and counteract acquired cardiovascular disease. This study illuminates aspects that may be relevant for performing physical activity.Purpose: To describe facilitators and barriers for physical activity in adults with CHD.Methods: Semi-structured interviews were performed individually with fourteen adults (age 19–68 years, women=7) with complex CHD. The interviews were analyzed using qualitative content analysis.Results: Aspects that may enable or inhibit physical activity were found in two domains; Facilitators and Barriers, which both consisted of four categories physical, psychological, psychosocial and environmental aspects (Table 1).

  • 3.
    Bay, Annika
    et al.
    Umeå University, Department of Public Health and Clinical Medicine, Umeå University, Sweden; Department of Nursing, Sweden.
    Dellborg, Mikael
    Gothenburg University, Institute of Medicine, The Sahlgrenska Academy, Sweden..
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Sweden.
    Sandberg, Camilla
    Umeå University, Department of Public Health and Clinical Medicine, Sweden.
    Engström, Gunnar
    Umeå University, Department of Surgical and Perioperative Science, Cardiothoracic Surgery Division,.
    Moons, Philip
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Sweden..
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Sweden..
    Patient reported outcomes are associated with physical activity level in adults with congenital heart disease.2017Inngår i: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 243, s. 174-179Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: In general, adults with congenital heart disease (CHD) have impaired exercise capacity, and approximately 50% do not reach current recommendations on physical activity. Herein we analysed factors associated with physical activity level (PAL) in adults with CHD by using patient-reported outcomes (PRO).

    METHODS: Patients with CHD (n=471) were randomly selected from the national register on CHD and categorized according to complexity of lesions - simple (n=172, 39.1±14.6years), moderate (n=212, 39±14.1years), and severe (n=87, 31.7±10.7years). Participants completed a standardized questionnaire measuring PRO-domains including PAL. Variables associated with PAL were tested in multivariate logistic regression.

    RESULTS: PAL was categorized into high (≥3 METs ≥2.5h/week, n=192) and low (≥3 METs <2.5h/week, n=279). Patients with low PAL were older (42.6 vs. 35.8years, p≤0.001), had more prescribed medications (51% vs. 39%, p=0.009), more symptoms (25% vs. 16%, p=0.02) and comorbidity (45% vs. 34% p=0.02). Patients with low PAL rated a lower quality of life (76.6 vs. 83.4, p<0.001), satisfaction with life (25.6 vs. 27.3, p=0.003), a lower Physical Component Summary score (PCS) (78.1 vs. 90.5, p<0.001) and Mental Component Summary score (MCS) (73.5 vs. 79.5, p<0.001). Complexity of heart lesion was not associated with PAL. The included PROs - separately tested in the model, together with age were associated with PAL.

    CONCLUSIONS: PCS and MCS are stronger associated with PAL than age and medical factors. The use of these PROs could therefore provide valuable information of benefit for individualized advice regarding physical activity to patients with CHD.

  • 4.
    Bay, Annika
    et al.
    Umeå University, Department of Public Health and Clinica Medicine, Sweden.
    Lämås, Kristina
    Umeå University, Department of Nursing, Umeå, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Paediatrics, The Queen Silvia Children’s Hospital .
    Sandberg, Camilla
    Umeå University, Department of Public Health and Clinical Medicine, Sweden; Umeå University, Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Enablers and barriers for being physically active: experiences from adults with congenital heart disease2021Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 20, nr 3, s. 276-284Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: In general, adults with congenital heart disease have reduced exercise capacity and many do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and to counteract acquired cardiovascular disease, therefore enablers and barriers for being physically active are important to identify.

    Aim: To describe what adults with complex congenital heart diseases consider as physical activity, and what they experience as enablers and barriers for being physically active. Methods: A qualitative study using semi-structured interviews in which 14 adults with complex congenital heart disease (seven women) participated. The interviews were analysed using qualitative content analysis.

    Results: The analysis revealed four categories considered enablers and barriers - encouragement, energy level, approach and environment. The following is exemplified by the category encouragement as an enabler: if one had experienced support and encouragement to be physically active as a child, they were more positive to be physically active as an adult. In contrast, as a barrier, if the child lacked support and encouragement from others, they had never had the opportunity to learn to be physically active.

    Conclusion: It is important for adults with congenital heart disease to have the opportunity to identify barriers and enablers for being physically active. They need knowledge about their own exercise capacity and need to feel safe that physical activity is not harmful. This knowledge can be used by healthcare professionals to promote, support and eliminate misconceptions about physical activity. Barriers can potentially be transformed into enablers through increased knowledge about attitudes and prerequisites. © The European Society of Cardiology 2020.

    Fulltekst (pdf)
    fulltext
  • 5.
    Bay, Annika
    et al.
    Umeå University, Department of Public Health and Clinical Medicine Department of Nursing.
    Lämås, Kristina
    Umeå University, Department of Nursing, .
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Sandberg, Camilla
    Umeå University, Department of Community Medicine and Rehabilitation, Physiotherapy, Sweden.
    Johansson, Bengt
    Department of Public Health and Clinical Medicine.
    It's like balancing on a slackline: A description of how adults with congenital heart disease describe themselves in relation to physical activity2018Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, nr 15-16, s. 3131-3138Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS AND OBJECTIVES: To illuminate how adults with CHD describe themselves in relation to physical activity.

    BACKGROUND: Several studies have shown that adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of immense importance to investigate how this population experiences physical activity.

    DESIGN: Qualitative study with semi-structured interviews analysed with qualitative content analysis.

    METHODS: Semi-structured interviews were individually performed with fourteen adults (women=7, age 19-68 years) with complex CHD. Patients were purposively recruited from the clinic waiting list, based on a scheduled follow-up and diagnosis.

    RESULTS: The overall theme, It's like balancing on a slackline, illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four subthemes: (1) Being an adventurer- enjoying the challenges of physical activity; (2) Being a realist- adapting to physical ability; (3) Being a non-doer- lacking prerequisites for physical activity; and (4) Being an outsider- feeling excluded depending on physical ability.

    CONCLUSIONS: Adults with CHD seem to have a diverse relationship to physical activity and it involves various aspects throughout the lifespan. The findings point out factors that might constitute as obstacles for being physically active, specific for people with chronic conditions like CHD. This highlights the importance of further exploring the hindering and facilitating factors for being physically active in order to get a deeper understanding of how to support adults with CHD to be physically active.

    RELEVANCE TO CLINICAL PRACTICE: Given the diverse relationship to physical activity, nurses have to further investigate the patients' relationship to physical activity, in order to support a healthy lifestyle. Nurses and allied health professionals should offer individualized exercise prescriptions and education about suitable physical activities in relation to physical ability. This article is protected by copyright. All rights reserved.

  • 6.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Is being physically active the key to a good quality of life for patients living with Fontan circulation?2016Inngår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, nr 11, s. 1257-1258Artikkel i tidsskrift (Annet vitenskapelig)
  • 7.
    Berghammer, Malin
    et al.
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Sahlgrenska Academy, Institute of Medicine.
    Brink, Eva
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för specialistsjuksköterskeutbildning.
    Rydberg, Annika M.
    University of Umeå, Department of Clinical Sciences, Pediatrics.
    Dellborg, Mikael
    Sahlgrenska Academy, Institute of Medicine.
    Ekman, Inger
    University of Gothenburg, Centre for Person-Centred Care.
    Committed to Life: Adolescents’ and Young Adults’ Experiences of Living with Fontan Circulation2015Inngår i: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 10, nr 5, s. 403-412Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background Single ventricle defects are among the most complex congenital heart defects and the development of advanced surgical procedures in recent decades has created the first generation of adolescents and young adults living with this condition. Yet little is known about how these individuals experience life and what impact the heart defect has on their life in general. Objective The aim was to illuminate and gain a deeper understanding of adolescents’ and young adults’ experiences of living with a surgically palliated univentricular heart. Design Seven open-ended in-depth interviews were conducted, transcribed, and analyzed according to the henomenological hermeneutical method. All adolescents and young adults operated before 1995 according to the Fontan procedure or the total cavo-pulmonary connection procedure at one pediatric cardiology unit were included in the study. They were 17–32 years of age (median age 22 years). Results The interpretation of the interview transcripts showed that the participants experienced living with a surgically palliated univentricular heart in terms of feeling exceptional, strong, and healthy. This was supported by two structural analyses, where three themes emerged: happiness over being me, focusing on possibilities, and being committed to life. Conclusion Living with a Fontan circulation included negative experiences but the analyses clearly demonstrated a feeling of being strong and healthy. An appreciation of having survived and being committed to life was found to be an integral part of the development of the interviewees’ existential growth. This probably strengthens them further in their ability to balance expectations and hurdles in life. This study provides valuable insights into the experience of patients after the Fontan procedure and the importance of a positive health care environment throughout their lives.

  • 8.
    Berghammer, Malin
    et al.
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Johansson, B.
    Umea University, Department of Public Health and Clinical Medicine, Umea, Sweden.
    Mattson, E.
    Karolinska University Hospital, Department of Cardiology, Stockholm, Sweden.
    Moons, P.
    The Sahlgrenska Academy at Gothenburg University, Institute of health and caring sciences, Gothenburg, Sweden;.
    Dellborg, M.
    University of Gothenburg, Institute of medicine, Sahlgrenska Academy, Gothenburg, Sweden.
    Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease2018Inngår i: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, nr Suppl 1, artikkel-id 2406Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The New York Heart Association (NYHA) classification is applied in a wide spectrum of heart diseases including adult patients with congenital heart disease (ACHD). The NYHA-class assessment is often based on the evaluation by the caregiver, but to what extent it correlates with the patient's view of their function is not fully known.Purpose: To investigate the relation between the patient's self-reported physical limitations, symptoms, other heart defect related factors and NYHA-class assessed by the caregiver.Methods: Eligible patients (n=333, age 39.2±13.6 years) were identified and randomly selected from the national registry for CHD. All of the patients completed a standardized questionnaire measuring different PRO-domains. By combing self-reported data with registry data including NYHA-class, analyses of agreement of physical limitations were performed.Results: Almost 30% of the patients rated their limitations higher compared to the NYHA-class estimated by the caregiver. Patients with self-reported limitations and their NYHA-class underestimated by caregivers, more often reported symptoms, anxiety, lower health and worked fewer hours/week compared to other patients with CHD. There were no differences regarding sex, type of symptoms, prescribed medications, or complexity of cardiac lesion. In patients without self-reported limitations agreement with NYHA-class estimated by caregivers was 97%.Conclusion: Adult patients with CHD and self-reported limitations may not be correctly identified by the care-giver. Instruments for patient reported outcomes might improve the assessment of physical limitations and could further improve the correctness in evaluating the patient's status.

  • 9.
    Berghammer, Malin
    et al.
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden.
    Mattsson, Eva
    Karolinska University Hospital, Department of Cardiology, Stockholm, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Moons, Philip
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Dellborg, M.
    The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden.
    Comparison of participants and non-participants in patient-reported outcome surveys: the case of Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study2017Inngår i: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, nr 3, s. 427-434Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The last decade has seen a vast increase in the use of patient-reported outcomes. As patient-reported outcomes are used in order to capture patients’ perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study), regarding demographic, clinical, and health status characteristics. Methods: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and non-participants were compared in terms of statistical significance and effect sizes. Results: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. Conclusions: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden. © Cambridge University Press 2016

  • 10.
    Bratt, Ewa-Lena
    et al.
    University of Gothenburg, Institution of Health and Care Sciences, Gothenburg, Sweden..
    Burström, Å
    Karolinska Institute, Institution for Women's and Children's Health, Stockholm, Sweden..
    Hanseus, K
    Department of Pediatric Cardiology, Skåne University Hospital, Lund, Sweden.
    Rydberg, A
    Umeå University, Department of Clinical Sciences, Pediatrics, Umeå, Sweden..
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Pediatrics, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
    Do not forget the parents: Parents' concerns during transition to adult care for adolescents with congenital heart disease2018Inngår i: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 44, nr 2, s. 278-284Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care.

    METHOD: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.

    RESULTS: The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.

    CONCLUSION: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.

  • 11.
    Callus, Edward
    et al.
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, Italy (ITA).
    Pagliuca, Silvana
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA).
    Boveri, Sara
    Scientific Directorate, IRCCS Policlinico San Donato, Milan, Italy (ITA).
    Ambrogi, Federico
    University of Milan, Department of Clinical Sciences and Community Health, Milan, Italy (ITA).
    Luyckx, Koen
    KU Leuven School Psychology and Development in Context, KU Leuven, Leuven, Belgium (BEL); UNIBS, University of the Free State, Bloemfontein, South Africa (ZAF).
    Kovacs, Adrienne H
    University of Toronto, Toronto Congenital Cardiac Center for Adults, Peter Munk Cardiac Center, University Health Network, Toronto, Canada (CAN); Oregon Health & Science University, Knight Cardiovascular Institute, Portland, Oregon (USA).
    Apers, Silke
    KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium (BEL).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium (BEL); KU Leuven Department of Cardiovascular Sciences, KU Leuven, Leuven, Belgium (BEL).
    Enomoto, Junko
    Toyo University, Department of Education, Tokyo, Japan (JPN).
    Sluman, Maayke A
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, the Netherlands (NLD); Department of Cardiology, Jeroen Bosch Hospital, 's Hertogenbosch, the Netherlands (NLD).
    Wang, Jou-Kou
    National Taiwan University Hospital, Department of Pediatrics, Taipei, Taiwan (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, Michigan (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina (ARG).
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway (NOR).
    Dellborg, Mikael
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; Department of Paediatrics, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine,Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, (USA).
    Soufi, Alexandra
    Department of Cardiac Rehabilitation, Médipôle Lyon-Villeurbanne, Lyon, France (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, California (USA).
    White, Kamila
    Washington University, Adult Congenital Heart Disease Center (USA); University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri (USA).
    Kutty, Shelby
    University of Nebraska, Adult Congenital Heart Disease Center Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska (USA); Taussig Heart Center, Johns Hopkins School of Medicine, Baltimore, Maryland (USA).
    Moons, Philip
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium(BEL); Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; University of Cape Town, Department of Paediatrics and Child Health, South Africa (ZAF).
    Phenotypes of adults with congenital heart disease around the globe: a cluster analysis.2021Inngår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 19, nr 1, artikkel-id 53Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL).

    METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL.

    RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities.

    CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.

  • 12.
    Caruana, Maryanne
    et al.
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Msida, MSD 2090, Malta.
    Apers, Silke
    University of Leuven, Department of Public Health and Primary Care, KU Leuven - 3000, Leuven, Belgium.
    Kovacs, Adrienne H
    Oregon Health & Science University, Portland,Knight Cardiovascular Institute, OR, USA..
    Luyckx, Koen
    University of Leuven, School Psychology and Child and Adolescent Development, KU Leuven - 3000, Leuven, Belgium.
    Thomet, Corina
    Center for Congenital Heart Disease, University Hospital Bern, Bern, Switzerland..
    Budts, Werner
    University of Leuven, Division of Congenital and Structural Cardiology, University Hospitals Leuven, KU Leuven - 3000, Leuven, Belgium..
    Sluman, Maayke
    Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands..
    Eriksen, Katrine
    Oslo University Hospital, Rikshospitalet, Oslo, Norway.
    Dellborg, Mikael
    The Sahlgrenska Academy at University of Gothenburg,Institute of Medicine, Gothenburg, Sweden..
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Clinical Medicine and Public Health, Umeå, Sweden..
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France.
    Callus, Edward
    Clinical Psychology Unit, IRCCS Policlinico San Donato, San Donato Milanese, Italy..
    Moons, Philip
    University of Leuven, Department of Public Health and Primary Care, KU Leuven - 3000, Leuven, Belgium..
    Grech, Victor
    University of Malta Medical School, Department of Paediatrics, MSD 2090, Msida, Malta..
    Red Flags for Maltese Adults with Congenital Heart Disease: Poorer Dental Care and Less Sports Participation Compared to Other European Patients-An APPROACH-IS Substudy.2017Inngår i: Pediatric Cardiology, ISSN 0172-0643, E-ISSN 1432-1971, Vol. 38, nr 5, s. 965-973Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Studies in recent years have explored lifestyle habits and health-risk behaviours in adult congenital heart disease (ACHD) patients when compared to controls. The aim of this study was to investigate differences in lifestyle habits between Maltese and other European ACHD patients. Data on alcohol consumption, cigarette smoking, substance misuse, dental care and physical activity collected in 2013-2015 during "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study" (APPROACH-IS) were analysed. Responses from 119 Maltese participants were compared to those of 1616 participants from Belgium, France, Italy, Norway, Sweden, Switzerland and the Netherlands. Significantly fewer Maltese patients with simple (Maltese 84.1% vs. European 97.5%, p < 0.001) and moderately complex CHD (Maltese 83.6% vs. European 97.4%, p < 0.001) brushed their teeth daily. Only 67.2% of Maltese with moderately complex disease had dental reviews in the previous year compared to 80.3% of Europeans (p = 0.02). Maltese patients with simple (Maltese 31.8% vs. European 56.1%, p = 0.002) and moderately complex lesions (Maltese 30.0% vs. European 59.2%, p < 0.001) performed less regular sport activities. Comparison by country showed Maltese patients to have significantly poorer tooth brushing and sports participation than patients from any other participating country. Alcohol consumption, cigarette smoking and substance misuse were not significantly different. This study highlights lifestyle aspects that Maltese ACHD patients need to improve on, which might not be evident upon comparing patients to non-CHD controls. These findings should also caution researchers against considering behaviours among patients in one country as necessarily representative of patients on the larger scale.

  • 13.
    Casteigt, Benjamin
    et al.
    Montreal Heart Institute, Université de Montréal, Montreal (CAN).
    Samuel, Michelle
    KU Leuven Department of Public Health and Primary Care, University of Leuven, Leuven (BEL).
    Laplante, Laurence
    Montreal Heart Institute, Université de Montréal, Montreal (CAN).
    Shohoudi, Azadeh
    Montreal Heart Institute, Université de Montréal, Montreal (CAN).
    Apers, Silke
    KU Leuven Department of Public Health and Primary Care, University of Leuven, Leuven (BEL).
    Kovacs, Adrienne H.
    Knight Cardiovascular Institute, Oregon Health & Science University, Portland (USA).
    Luyckx, Koen
    KU Leuven—University of Leuven, Psychology and Development in Context, Leuven (BEL); UNIBS, University of the Free State, Bloemfontein (ZAF).
    Thomet, Corina
    Center for Congenital Heart Disease, Inselspital—Bern University Hospital, University of Bern, Bern (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven (BEL); Department of Cardiovascular Sciences, KU Leuven, Leuven (BEL); .
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba (JPN).
    Sluman, Maayke A.
    Department of Cardiology, Jeroen Bosch Hospital, Hertogenbosch (NLD); Coronel Institute for Occupational Health, Academic Medical Centre, Amsterdam (NLD).
    Lu, Chun-Wei
    Department of Pediatrics, National Taiwan University Hospital, Taipei (TWN).
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus (USA).
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids (USA).
    Chidambarathanu, Shanthi
    Frontier Lifeline Hospital (Dr. K.M. Cherian Heart Foundation), Chennai (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba (ARG).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital—Rikshospitalet, Oslo (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg (SWE).
    Johansson, Bengt
    Department of Public Health and Clinical Medicine, Umeå University, Umeå (SWE).
    Mackie, Andrew S.
    Division of Cardiology, Stollery Children’s Hospital, University of Alberta, Edmonton (CAN).
    Menahem, Samuel
    Monash Medical Centre, Monash University, Melbourne (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass (MLT)).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital, Cincinnati (USA).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Lyon (FRA).
    Fernandes, Susan M.
    Department of Pediatrics and Medicine, Stanford University School of Medicine, Palo Alto (USA).
    White, Kamila
    Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, and University of Missouri, Saint Louis (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan (ITA); Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan (ITA).
    Kutty, Shelby
    Adult Congenital Heart Disease Center, University of Nebraska Medical Center/Children's Hospital & Medical Center, Omaha (USA).
    Brouillette, Judith
    Montreal Heart Institute, Université de Montréal, Montreal (CAN).
    Moons, Philip
    KU Leuven—University of Leuven, Department of Public Health and Primary Care, Leuven (BEL); Belgium Institute of Health and Care Sciences, University of Gothenburg, Gothenburg (SWE); Department of Paediatrics and Child Health, University of Cape Town, Cape Town (ZAF).
    Khairy, Paul
    Montreal Heart Institute, Université de Montréal, Montreal (CAN).
    Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study2021Inngår i: Heart Rhythm, ISSN 1547-5271, E-ISSN 1556-3871, Vol. 18, nr 5, s. 793-800Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background Atrial arrhythmias (ie, intra-atrial reentrant tachycardia and atrial fibrillation) are a leading cause of morbidity and hospitalization in adults with congenital heart disease (CHD). Little is known about their effect on quality of life and other patient-reported outcomes (PROs) in adults with CHD. Objective The purpose of this study was to assess the impact of atrial arrhythmias on PROs in adults with CHD and explore geographic variations. Methods Associations between atrial arrhythmias and PROs were assessed in a cross-sectional study of adults with CHD from 15 countries spanning 5 continents. A propensity-based matching weight analysis was performed to compare quality of life, perceived health status, psychological distress, sense of coherence, and illness perception in patients with and those without atrial arrhythmias. Results A total of 4028 adults with CHD were enrolled, 707 (17.6%) of whom had atrial arrhythmias. After applying matching weights, patients with and those without atrial arrhythmias were comparable with regard to age (mean 40.1 vs 40.2 years), demographic variables (52.5% vs 52.2% women), and complexity of CHD (15.9% simple, 44.8% moderate, and 39.2% complex in both groups). Patients with atrial arrhythmias had significantly worse PRO scores with respect to quality of life, perceived health status, psychological distress (ie, depression), and illness perception. A summary score that combines all PRO measures was significantly lower in patients with atrial arrhythmias (-3.3%; P = .0006). Differences in PROs were consistent across geographic regions. Conclusion Atrial arrhythmias in adults with CHD are associated with an adverse impact on a broad range of PROs consistently across various geographic regions.

  • 14.
    Fogleman, Nicholas D.
    et al.
    Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
    Apers, Silke
    KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Moons, Philip
    KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Morrison, Stacey
    Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
    Wittekind, Samuel G.
    Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
    Tomlin, Martha
    Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
    Gosney, Kathy
    Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
    Sluman, Maayke A.
    Academic Medical Center, Department of Cardiology, Amsterdam, the Netherlands.
    Johansson, Bengt
    University Hospital of Umeå, Umeå, Sweden.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Dellborg, Mikael
    The Sahlgrenska Academy at University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Lu, Chun-Wei
    Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Luyckx, Koen
    School Psychology and Child and Adolescent Development, KU Leuven, Leuven, Belgium.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium.
    Jackson, Jamie
    Columbus Ohio Adult Congenital Heart Disease Program, Nationwide Children's Hospital, The Ohio State College of Medicine, Columbus, OH.
    Kovacs, Adrienne
    Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, Toronto, Ontario, Canada.
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France.
    Eriksen, Katrine
    Oslo University Hospital, Rikshospitalet, Oslo, Norway.
    Thomet, Corina
    Center for Congenital Heart Disease, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Callus, Edward
    Clinical Psychology Services IRCCS Policlinico San Donato, Milan, Italy.
    Fernandes, Susan M.
    Stanford Hospital and Clinics, Stanford, CA.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Msida, Malta.
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA.
    Mackie, Andrew S.
    University of Alberta, Edmonton, Alberta, Canada.
    White, Kamila S.
    Washington University and Barnes Jewish Heart & Vascular Center, and University of Missouri, Saint Louis, MO.
    Khairy, Paul
    Congenital Heart Center, Montreal Heart Institute, Montreal, Quebec, Canada.
    Kutty, Shelby
    University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE.
    Veldtman, Gruschen
    Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
    Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective2017Inngår i: American Heart Journal, ISSN 0002-8703, E-ISSN 1097-6744, Vol. 193, nr Supplement C, s. 55-62Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BackgroundImpaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs).MethodsFrom the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings.ResultsPatients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD.ConclusionsRegional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.

  • 15.
    Garcia de Avila, Marla Andréia
    et al.
    UNESP-Universidade Estadual Paulista, Botucatu Medical School, Department of Nursing, Botucatu 18618-687, Brazil (BRA).
    Hamamoto Filho, Pedro Tadao
    UNESP-Universidade Estadual Paulista, Botucatu Medical School, Department of Neurology, Botucatu 18618-687, Brazil (BRA).
    da Silva Jacob, Francine Letícia
    UNESP-Universidade Estadual Paulista, Botucatu Medical School, Department of Nursing, Botucatu 18618-687, Brazil (BRA).
    Souza Alcantara, Léia Regina
    UNESP-Universidade Estadual Paulista, Botucatu Medical School, Department of Nursing, Botucatu 18618-687, Brazil (BRA).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. The Queen Silvia Children's Hospital, 416 50 Gothenburg, Sweden.
    Jenholt Nolbris, Margaretha
    The Queen Silvia Children's Hospital, 416 50 Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences; University of Gothenburg, Sahlgrenska Academy, Centre for Person-Centred Care, 405 30 Gothenburg, Sweden.
    Olaya-Contreras, Patricia
    University of Gothenburg, Institute of Health and Care Sciences; University of Gothenburg, Sahlgrenska Academy, Centre for Person-Centred Care, 405 30 Gothenburg, Sweden.
    Nilsson, Stefan
    University of Gothenburg, Institute of Health and Care Sciences; University of Gothenburg, Sahlgrenska Academy, Centre for Person-Centred Care, 405 30 Gothenburg, Sweden.
    Children's Anxiety and Factors Related to the COVID-19 Pandemic: An Exploratory Study Using the Children's Anxiety Questionnaire and the Numerical Rating Scale2020Inngår i: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 17, nr 16, artikkel-id E5757Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The repercussions of the COVID-19 pandemic on children's lives deserve attention. This study aimed to assess the prevalence of anxiety among Brazilian children and its associated factors during social distancing during COVID-19. We used a cross-sectional design with an online survey from April to May 2020 in Brazil. We included children aged 6-12 years and their guardians. The Children's Anxiety Questionnaire (CAQ; scores 4-12) and the Numerical Rating Scale (NRS; scores 0-10) were used to measure anxiety. We enrolled 157 girls and 132 boys, with a mean age of 8.84 (±2.05) years; 88.9% of respondents were mothers. Based on CAQ ≥ 9, the prevalence of anxiety was 19.4% (n = 56), and higher among children with parents with essential jobs and those who were social distancing without parents. In logistic regression, the following variables were associated with higher CAQ scores: social distancing without parents; more persons living together in home; and education level of guardians. Based on NRS > 7, the prevalence of anxiety was 21.8% (n = 63); however, no associations with NRS scores were found with the investigated variables. These findings suggest the necessity of implementing public health actions targeting these parents and their children at the population level.

  • 16.
    Holbein, Christina E.
    et al.
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Fogleman, Nicholas D.
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Hommel, Kevin
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Apers, Silke
    KU Leuven, Leuven, Belgium.
    Rassart, Jessica
    KU Leuven, Leuven, Belgium.
    Moons, Philip
    KU Leuven, Leuven, Belgium & University of Gothenburg, Gothenburg, Sweden..
    Luyckx, Koen
    KU Leuven, Leuven, Belgium.
    Sluman, Maayke A.
    Amsterdam Medical Center, Amsterdam, The Netherlands.
    Enomoto, Junko
    Chiba Cardiovascular Center, Chiba, Japan.
    Johansson, Bengt
    Umeå University, Umeå, Sweden.
    Yang, Hsiao-Ling
    National Taiwan University, Taipei, Taiwan.
    Dellborg, Mikael
    University of Gothenburg, Gothenburg, Sweden.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Jackson, Jamie L.
    Nationwide Children's Hospital, Columbus, Ohio, USA.
    Budts, Werner
    University Hospitals Leuven and Department of Cardiovascular Sciences, Leuven, Belgium..
    Kovacs, Adrienne H.
    Oregon Health & Science University, Portland, Oregon, USA.
    Morrison, Stacey
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Tomlin, Martha
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Gosney, Kathy
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France.
    Eriksen, Katrine
    Oslo University Hospital, Oslo, Norway.
    Thomet, Corina
    KU Leuven, Leuven, Belgium.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Gothenburg, Sweden.
    Alday, Luis
    Hospital de Niños, Córdoba, Argentina.
    Callus, Edward
    IRCCS Policlinico San Donato Hospital, Milan, Italy.
    Fernandes, Susan M
    Stanford University, Palo Alto, California, USA.
    Caruana, Maryanne
    Mater Dei Hospital, Msida, Malta.
    Menahem, Samuel
    Monash Medical Center, Melbourne, Australia.
    Cook, Stephen C.
    Helen DeVos Children's Hospital, Grand Rapids, Michigan, USA.
    Rempel, Gwen R.
    University of Alberta, Edmonton, Canada.
    White, Kamila
    Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri, USA.
    Khairy, Paul
    Montreal Heart Institute, Montreal, Canada.
    Kutty, Shelby
    Children's Hospital & Medical Center, Omaha, Nebraska, USA.
    Veldtman, Gruschen
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation2018Inngår i: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 13, nr 3, s. 392-400Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. Design Cross-sectional observational study. Setting Twenty-four cardiology centers from 15 countries across five continents. Patients Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. Outcome Measures QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. Results Patients with a Fontan circulation reported lower QOL (Wald Z = −3.59, p = <.001) and more negative perceptions of their CHD (Wald Z = −7.66, p < .001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβ = 0.15, p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions. Conclusions The Fontan sample’s more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.

  • 17.
    Holbein, Christina E.
    et al.
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, United States USA (USA).
    Peugh, James
    Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, United States USA (USA).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States USA (USA).
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium (BEL).
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, Belgium (BEL).
    Kovacs, Adrienne H
    University Health Network, University of Toronto, Peter Munk Cardiac Centre, Toronto, Canada (CAN); Oregon Health & Science University, Knight Cardiovascular Institute, Portland, OR, USA (USA).
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern, Switzerland (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium (BLE); KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium (BLE).
    Enomoto, Junko
    Department of Adult Congenital Heart Disease,Cardiovascular Center, Chiba, Japan (JPN).
    Sluman, Maayke A
    University of Amsterdam, Coronel Institute of Occupational Health, Netherlands (NLD).
    Lu, Chun-Wei
    National Taiwan University Children’s Hospital, Adult Congenital Heart Center, Taiwan (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina (ARG).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo, Norway (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta (MLT).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, USA (USA).
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center, USA (USA): University of Missouri, Barnes Jewish Heart and Vascular Center USA (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Italy (ITA); Universita degli Studi di Milano,Department of Biomedical Sciences for Health, Italy (ITA).
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, USA (USA);Taussig Heart Center, Johns Hopkins School of Medicine USA (USA).
    Moons, Philip
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium (BEL); University of Gothenburg, Institute of Health and Care Sciences, Sweden;University of Cape Town, Department of Paediatrics and Child Health, South Africa (ZAF).
    Health behaviours reported by adults with congenital heart disease across 15 countries2020Inngår i: European Journal of Preventive Cardiology, ISSN 2047-4873, E-ISSN 2047-4881, Vol. 10, s. 1077-1087Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Health behaviours are essential to maintain optimal health and reduce the risk of cardiovascular complications in adults with congenital heart disease. This study aimed to describe health behaviours in adults with congenital heart disease in 15 countries and to identify patient characteristics associated with optimal health behaviours in the international sample. Design: This was a cross-sectional observational study. Methods: Adults with congenital heart disease (n = 4028, median age = 32 years, interquartile range 25–42 years) completed self-report measures as part of the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS). Participants reported on seven health behaviours using the Health Behaviors Scale-Congenital Heart Disease. Demographic and medical characteristics were assessed via medical chart review and self-report. Multivariate path analyses with inverse sampling weights were used to investigate study aims. Results: Health behaviour rates for the full sample were 10% binge drinking, 12% cigarette smoking, 6% recreational drug use, 72% annual dental visit, 69% twice daily tooth brushing, 27% daily dental flossing and 43% sport participation. Pairwise comparisons indicated that rates differed between countries. Rates of substance use behaviours were higher in younger, male participants. Optimal dental health behaviours were more common among older, female participants with higher educational attainment while sports participation was more frequent among participants who were younger, male, married, employed/students, with higher educational attainment, less complex anatomical defects and better functional status. Conclusions: Health behaviour rates vary by country. Predictors of health behaviours may reflect larger geographic trends. Our findings have implications for the development and implementation of programmes for the assessment and promotion of optimal health behaviours in adults with congenital heart disease. © The European Society of Cardiology 2019.

  • 18.
    Holbein, Christina E
    et al.
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
    Veldtman, Gruschen R
    King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
    Moons, Philip
    KU Leuven – University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; University of Cape Town, Department of Paediatrics and Child Health, Cape Town, South Africa.
    Kovacs, Adrienne H
    University of Toronto, Peter Munk Cardiac Centre, University Health Network,Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA.
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Development in Context, Leuven, Belgium ;UNIBS, University of the Free State Bloemfontein, Bloemfontein, South Africa.
    Apers, Silke
    KU Leuven – University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Chidambarathanu, Shanti
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway.
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio, USA.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Fernandes, Susan M
    Stanford University School of Medicine, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, California, USA.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine,Umeå, Sweden.
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden .
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Menahem, Samuel
    Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara, Malta.
    Kutty, Shelby
    University of Nebraska Medical Center/ Children's Hospital and Medical Center, Adult Congenital Heart Disease Center, Omaha, Nebraska.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital,Edmonton, Canada.
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital - Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium.
    White, Kamila
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
    Sluman, Maayke A
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA: KU Leuven – University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Callus, Edward
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden .
    Cook, Stephen C
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Cape Town, Cape Town, Department of Paediatrics and Child Health, South Africa .
    Khairy, Paul
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Toronto, Peter Munk Cardiac Centre, University Health Network, Toronto, Canada.
    Cedars, Ari
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Oregon Health & Science University, Knight Cardiovascular Institute, Portland, Oregon.
    Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation2019Inngår i: American Journal of Cardiology, ISSN 0002-9149, E-ISSN 1879-1913, Vol. 124, nr 1, s. 144-150Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Patients with a Fontan circulation are at risk of a sedentary lifestyle. Given the direct relationship between physical activity and health, promotion of physical activity has the potential to improve outcomes, including quality of life (QOL). This study aimed to describe self-reported physical activity levels in adult Fontan patients and examine associations between physical activity, perceived health status and QOL. The sample consisted of 177 Fontan patients (Mage = 27.5 ± 7.6 years, 52% male) who reported their physical activity, perceived health status, and QOL as part of the cross-sectional Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study. Descriptive statistics and univariate analyses of variance with planned contrasts were computed to describe physical activity characteristics. Mediation analyses tested whether perceived health status variables mediated the association between physical activity and QOL. Forty-six percent of patients were sedentary while only 40% met international physical activity guidelines. Higher physical activity was associated with younger age, lower NYHA class, higher perceived general health, and greater QOL. Patients who commuted by walking and engaged in sports reported better perceived health and QOL. Mediation analyses revealed that perceived general health but not NYHA functional class mediated the association between physical activity and QOL (αβ = 0.22, 95% confidence interval = 0.04 to 0.49). In conclusion, Fontan patients likely benefit from regular physical activity, having both higher perceived general health and functional capacity; greater perceived health status may contribute to enhanced QOL. In conclusion, these data support the pivotal role of regular physical activity for Fontan patients.

  • 19.
    Hummel, Kevin
    et al.
    Department of Pediatrics, University of Utah, Salt Lake City, Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
    Whittaker, Sarah
    International Consortium for Health Outcomes Measurement, Cambridge (USA).
    Sillett, Nick
    International Consortium for Health Outcomes Measurement, Cambridge (USA).
    Basken, Amy
    Pediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA) .
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg (SWE).
    Chalela, Tomás
    Fundacion Cardiofantil, Bogota (COL).
    Chauhan, Julie
    All India Institute of Medical Sciences, New Delhi (IND).
    Garcia, Luis Antonio
    Kardias A.C. Foundation, Mexico City (MEX).
    Hasan, Babar
    Department of Pediatrics, Aga Khan University, Karachi City (PAK).
    Jenkins, Kathy
    Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
    Ladak, Laila Akbar
    Department of Pediatrics, Aga Khan University, Karachi City (PAK) Susan Wakil School of Nursing, The University of Sydney, Sydney (AUS).
    Madsen, Nicolas
    Department of Cardiology, Cincinnati Children's Hospital, Cincinnati (USA).
    March, Almudena
    Kardias A.C. Foundation, Mexico City (MEX).
    Pearson, Disty
    Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
    Schwartz, Steven M
    Department of Cardiology, The Hospital for Sick Children, Toronto (CAN).
    St Louis, James D
    Department of Surgery, Medical College of Georgia, Augusta (USA).
    van Beynum, Ingrid
    Department of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Sophia Children's Hospital, Rotterdam (NLD).
    Verstappen, Amy
    Global Alliance for Rheumatic and Congenital Hearts, Philadelphia (USA).
    Williams, Roberta
    Department of Cardiology, Children's Hospital Los Angeles (USA).
    Zheleva, Bistra
    Children's HeartLink, Minneapolis (USA).
    Hom, Lisa
    Department of Cardiology, Children's National Hospital, Washington (USA).
    Martin, Gerard R
    Department of Cardiology, Children's National Hospital, Washington (USA).
    Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group.2021Inngår i: European Heart Journal - Quality of Care and Clinical Outcomes, ISSN 2058-5225, E-ISSN 2058-1742, Vol. 7, nr 4, s. 354-365Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS: Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients.

    METHODS AND RESULTS: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: (i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form.

    CONCLUSION: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.

  • 20.
    Jenholt Nolbris, Margareta
    et al.
    Institute of Health and Care Sciences, University of Gothenburg, Sweden The Queen Silivia Children’s Hospital Sahlgrenska University Hospital (SWE).
    Ragnarsson, S.
    Department of Epidemiology and Global Health, Umeå University; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, (SWE).
    Brorsson, A -L
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet (SWE).
    Garcia de Avila, M.
    Department of Nursing, Botucatu Medical School - UNESP (BRA).
    Forsner, M.
    Department of Nursing, Umeå University, Sweden Department of Biosciences and Nutrition, Karolinska Institutet, (SWE).
    Kull, I.
    Department of Clinical Science and Education, Karolinska Institutet, Sweden Sachs’ Children and Youth’s Hospital, Södersjukhuset (SWE).
    Olinder, A. L.
    Department of Clinical Science and Education, Karolinska Institutet, Sweden Sachs’ Children and Youth’s Hospital, Södersjukhuset (SWE).
    Mattson, J.
    Department of Health Science, The Swedish Red Cross University College, Sweden Department of Learning, Informatics, Management and Ethics, Karolinska Institutet (SWE).
    Nilsson, S.
    Institute of Health and Care Sciences, University of Gothenburg, Sweden Centre for Person-Centred Care, University of Gothenburg (SWE).
    Rullander, A -C
    Department of Nursing, Umeå University (SWE).
    Rydström, L -L
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet (SWE).
    Olaya-Contreras, P.
    Institute of Health and Care Sciences, University of Gothenburg, Sweden Centre for Person-Centred Care, University of Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. The Queen Silivia Children’s Hospital Sahlgrenska University Hospital (SWE).
    Young children’s voices in an unlocked Sweden during the COVID-19 pandemic2022Inngår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 50, nr 6, s. 693-702Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aims: During the COVID-19 pandemic, Sweden was one of the few countries that rejected lockdowns in favour of recommendations for restrictions, including careful hand hygiene and social distancing. Preschools and primary schools remained open. Several studies have shown negative impacts of the pandemic on children, particularly high levels of anxiety. The study aim was to explore how Swedish school-aged children aged 6–14 years, experienced the COVID-19 pandemic and their perceived anxiety. Methods: In total, 774 children aged 6–14 years and their guardians answered an online questionnaire containing 24 questions, along with two instruments measuring anxiety: the Children’s Anxiety Questionnaire and the Numerical Rating Scale. A convergent parallel mixed-methods design was used for analysing the quantitative and qualitative data. Each data source was first analysed separately, followed by a merged interpretative analysis. Results: The results showed generally low levels of anxiety, with no significant sex differences. Children who refrained from normal social activities or group activities (n=377) had significantly higher levels of anxiety. Most of the children were able to appreciate the bright side of life, despite the social distancing and refraining from activities, which prevented them from meeting and hugging their loved ones. Conclusions: These Swedish children generally experienced low levels of anxiety, except those who refrained from social activities. Life was nonetheless mostly experienced as normal, largely because schools remained open. Keeping life as normal as possible could be one important factor in preventing higher anxiety and depression levels in children during a pandemic.  

    Fulltekst (pdf)
    fulltext
  • 21.
    Ko, Jong Mi
    et al.
    The University of Texas Southwestern Medical Center, Department of Internal Medicine, Division of Cardiology, Dallas, TX, USA.
    White, Kamila S
    University of Missouri, Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center,Saint Louis, MO, USA.
    Kovacs, Adrienne H
    University Health Network, University of Toronto, Peter Munk Cardiac Centre, Toronto, Canada; Oregon Health & Science University, Knight Cardiovascular Institute, Portland, OR, USA.
    Tecson, Kristen M
    Baylor Heart and Vascular Institute, Dallas, TX, USA.
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, Belgium.
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium..
    Enomoto, Junko
    Department of Adult Congenital Heart Disease,Cardiovascular Center, Chiba, Chiba, Japan.
    Sluman, Maayke A
    Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands.
    Wang, Jou-Kou
    Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada.
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA.
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo, Norway.
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada.
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
    Fernandes, Susan M
    Stanford University School of Medicine, Department of Pediatrics and Medicine, Divisions of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, CA, USA.
    Callus, Edward
    Università degli Studi di Milano, Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy; Department of Biomedical Sciences for Health, Milan, Italy.
    Kutty, Shelby
    Adult Congenital Heart Disease Center, University of Nebraska Medical Center, Children's Hospital and Medical Center, Omaha, NE, USA.
    Moons, Philip
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium; Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Cedars, Ari M
    Department of Internal Medicine, Division of Cardiology, The University of Texas Southwestern Medical Center, Dallas, TX, USA.
    Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study2019Inngår i: Journal of Psychosomatic Research, ISSN 0022-3999, E-ISSN 1879-1360, Vol. 124, artikkel-id 109762Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: This study aimed to examine the association between physical activity (PA) and depression in a large international cohort of adults with congenital heart disease (ACHD) as data about the differential impact of PA type on depression in this population are lacking.

    METHODS: In 2018, we conducted a cross-sectional assessment of 3908 ACHD recruited from 24 ACHD-specialized centers in 15 countries between April 2013 to March 2015. The Hospital Anxiety and Depression Scale was used to assess self-reported depressive symptoms and the Health-Behavior Scale-Congenital Heart Disease was used to collect PA information. Cochran-Armitage tests were performed to assess trends between depressive symptom levels and PA participation. Chi-Square and Wilcoxon Rank Sum tests were utilized to examine relations between depressive symptom levels and patient characteristics. Stepwise multivariable models were then constructed to understand the independent impact of PA on depressive symptoms.

    RESULTS: The overall prevalence of elevated depressive symptoms in this sample was 12% with significant differences in rates between countries (p < .001). Physically active individuals were less likely to be depressed than those who were sedentary. Of the 2 PA domains examined, sport participation rather than active commute was significantly associated with reduced symptoms of depression. After adjustment in multivariable analysis, sport participation was still significantly associated with 38% decreased probability of depressive symptoms (p < .001).

    CONCLUSIONS: Sport participation is independently associated with reduced depressive symptoms. The development and promotion of sport-related exercise prescriptions uniquely designed for ACHD may improve depression status in this unique population.

  • 22.
    Ko, Jong Mi
    et al.
    The University of Texas, Department of Internal Medicine, Division of Cardiology, Southwestern Medical Center, Dallas, Texas.
    White, Kamila S
    University of Missouri, Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri.
    Kovacs, Adrienne H
    University of Toronto, Peter Munk Cardiac Centre, University Health Network, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon.
    Tecson, Kristen M
    Baylor Heart & Vascular Institute, Baylor Scott & White Research Institute, Dallas, Texas.
    Apers, Silke
    KU Leuven-University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Luyckx, Koen
    KU Leuven-University of Leuven, School Psychology and Child and Adolescent Development, Leuven, Belgium.
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital-Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    KU Leuven-University of Leuven, Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Sluman, Maayke A
    Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands.
    Wang, Jou-Kou
    National Taiwan University, School of Nursing, College of Medicine,Taipei, Taiwan.
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio.
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada.
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, Michigan.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital-Rikshospitalet, Oslo, Norway.
    Dellborg, Mikael
    The Sahlgrenska Academy at University of Gothenburg, Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada.
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
    Fernandes, Susan M
    Stanford University School of Medicine, Department of Pediatrics and Medicine, Divisions of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, California.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy.
    Kutty, Shelby
    University of Nebraska Medical Center/ Children's Hospital and Medical Center, Adult Congenital Heart Disease Center, Omaha, Nebraska, USA.
    Gandhi, Amarendra
    KU Leuven-University of Leuven, School Psychology and Child and Adolescent Development, Leuven, Belgium.
    Moons, Philip
    University of Gothenburg, KU Leuven Department of Public Health and Primary Care, KU Leuven-University of Leuven, Leuven, Belgium; Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden..
    Cedars, Ari M
    The University of Texas Southwestern Medical Center, Department of Internal Medicine, Division of Cardiology, Dallas, Texas.
    Physical Activity-Related Drivers of Perceived Health Status in Adults With Congenital Heart Disease2018Inngår i: American Journal of Cardiology, ISSN 0002-9149, E-ISSN 1879-1913, Vol. 122, nr 8, s. 1437-1442, artikkel-id S0002-9149(18)31423-1Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Data on the differential impact of physical activity on perceived health status (PHS) in a large adult congenital heart disease (ACHD) patient population are lacking. We conducted a cross-sectional assessment of 4,028 ACHD patients recruited from 24 ACHD-specialized centers in 15 countries across 5 continents to examine the association between physical activity and PHS in a large international cohort of ACHD patients. A linear analog scale of the EuroQol-5D 3 level version and the 12-item Short Form Health Survey-version 2 were used to assess self-reported health status and the Health-Behavior Scale-Congenital Heart Disease was used as a subjective measurement of physical activity type, participation, and level. Correlation analyses and Wilcoxon Rank Sum tests examined bivariate relations between sample characteristics and PHS scores. Then, multivariable models were constructed to understand the impact of physical activity on PHS. Only 30% of our sample achieved recommended physical activity levels. Physically active patients reported better PHS than sedentary patients; however, the amount of physical activity was not associated with PHS. Further statistical analyses demonstrated that specifically sport participation regardless of physical activity level was a predictor of PHS. In conclusion, the majority of ACHD patients across the world are physically inactive. Sport participation appears to be the primary physical activity-related driver of PHS. By promoting sport-related exercise ACHD specialists thus may improve PHS in ACHD patients.

  • 23.
    Kovacs, Adrienne H.
    et al.
    Equilibria Psychological Health, Toronto, Ontario (CAN).
    Luyckx, Koen
    School Psychology and Development in Context, KU Leuven–University of Leuven, Leuven (BEL); UNIBS, University of the Free State, Bloemfontein (ZAF).
    Thomet, Corina
    Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, University of Bern, Bern (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven (BEL); KU Leuven Department of Cardiovascular Sciences, KU Leuven–University of Leuven, Leuven (BEL).
    Enomoto, Junko
    Department of Education, Toyo University, Tokyo (JPN).
    Sluman, Maayke A.
    Department of Cardiology, Academic Medical Center, Amsterdam (NLD); Department of Cardiology, Jeroen Bosch Hospital, ‘s-Hertogenbosch (NLD).
    Lu, Chun-Wei
    Department of Pediatrics, National Taiwan University Hospital, Taipei (TWN).
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children’s Hospital, Columbus, Ohio (USA).
    Khairy, Paul
    Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal (CAN).
    Cook, Stephen C.
    IU Health Adult Congenital Heart Disease Program, IU School of Medicine, Indianapolis, Indiana (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr K. M. Cherian Heart Foundation), Chennai (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba (ARG).
    Estensen, Mette-Elise
    Department of Cardiology, Oslo University Hospital, Rikshospitalet, Oslo (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg (SWE); Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Johansson, Bengt
    Department of Surgery and Perioperative Sciences, Umeå University, Umeå (SWE).
    Mackie, Andrew S.
    Division of Cardiology, Stollery Children’s Hospital, University of Alberta, Edmonton, Alberta (CAN).
    Menahem, Samuel
    Department of Paediatrics and School of Clinical Sciences, Monash University, Melbourne, Victoria (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio (USA).
    Soufi, Alexandra
    Department of Cardiac Rehabilitation, Médipôle Hôpital Mutualiste, Lyon-Villeurbanne (FRA).
    Jameson, Susan M.
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, Palo Alto, California (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, San Donato Milanese, Milan (ITA): Department of Biomedical Sciences for Health, University of Milan, Milan (ITA).
    Kutty, Shelby
    Adult Congenital Heart Disease Center University of Nebraska Medical Center/ Children’s Hospital and Medical Center, Omaha, Nebraska (USA).
    Oechslin, Erwin
    Toronto Adult Congenital Heart Disease Program, Peter Munk Cardiac Centre, University Health Network, Toronto, Ontario (CAN); University of Toronto, Toronto, Ontario,(CAN).
    Van Bulck, Liesbet
    KU Leuven Department of Public Health and Primary Care, KU Leuven–University of Leuven, Leuven (BEL); Research Foundation Flanders (FWO), Brussels (BEL).
    Moons, Philip
    KU Leuven Department of Public Health and Primary Care, KU Leuven–University of Leuven, Leuven (BEL); Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg (SWE); Institute of Health and Care Sciences, University of Gothenburg (SWE); Department of Paediatrics and Child Health, University of Cape Town, Cape Town (ZAF.
    Anxiety and Depression in Adults With Congenital Heart Disease2024Inngår i: Journal of the American College of Cardiology, ISSN 0735-1097, E-ISSN 1558-3597, Vol. 83, nr 3, s. 430-441Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: A comprehensive understanding of adult congenital heart disease outcomes must include psychological functioning. Our multisite study offered the opportunity to explore depression and anxiety symptoms within a global sample.

    Objectives: In this substudy of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults With Congenital Heart Disease–International Study), the authors we investigated the prevalence of elevated depression and anxiety symptoms, explored associated sociodemographic and medical factors, and examined how quality of life (QOL) and health status (HS) differ according to the degree of psychological symptoms.

    Methods: Participants completed the Hospital Anxiety and Depression Scale, which includes subscales for symptoms of anxiety (HADS-A) and depression (HADS-D). Subscale scores of 8 or higher indicate clinically elevated symptoms and can be further categorized as mild, moderate, or severe. Participants also completed analogue scales on a scale of 0 to 100 for QOL and HS. Analysis of variance was performed to investigate whether QOL and HS differed by symptom category.

    Results: Of 3,815 participants from 15 countries (age 34.8 ± 12.9 years; 52.7% female), 1,148 (30.1%) had elevated symptoms in one or both subscales: elevated HADS-A only (18.3%), elevated HADS-D only (2.9%), or elevations on both subscales (8.9%). Percentages varied among countries. Both QOL and HS decreased in accordance with increasing HADS-A and HADS-D symptom categories (P < 0.001).

    Conclusions: In this global sample of adults with congenital heart disease, almost one-third reported elevated symptoms of depression and/or anxiety, which in turn were associated with lower QOL and HS. We strongly advocate for the implementation of strategies to recognize and manage psychological distress in clinical settings. (Patient-Reported Outcomes in Adults With Congenital Heart Disease [APPROACH-IS]; NCT02150603) 

  • 24.
    Larsson, Lena
    et al.
    Umeå University, Heart Center and Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Johansson, Bengt
    Umeå University, Heart Center and Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Sandberg, Camilla
    Umeå University, Heart Center and Department of Public Health and Clinical Medicine, Umeå, Sweden; Umeå University, Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå, Sweden.
    Apers, Silke
    University of Leuven, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
    Kovacs, Adrienne H.
    Peter Munk Cardiac Centre, University Health Network, Toronto, Ontario, Canada; Oregon Health & Science University, Knight Cardiovascular Institute, Portland, OR, United States.
    Luyckx, Koen
    University of Leuven, School Psychology and Development in Context, KU Leuven, Leuven, Belgium.
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital — Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; University of Leuven, Department of Cardiovascular Sciences, KU Leuven, Leuven, Belgium.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Sluman, Maayke A.
    Department of Cardiology, Academic Medical Center, Amsterdam, Netherlands.
    Wang, Jou-Kou
    Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, United States.
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada.
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, United States.
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
    Dellborg, Mikael
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden;Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; nstitute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
    Rempel, Gwen
    University of Alberta, Northern Alberta Adult Congenital Heart Clinic, Edmonton, Canada.
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Msida, MSD 2090, Malta.
    Tomlin, Martha
    The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
    Fernandes, Susan M.
    Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital, Stanford Health Care, Stanford School of Medicine, Palo Alto, CA, United States.
    White, Kamila
    University of Missouri, Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, Saint Louis, MO, United States.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, San Donato Milanese, Milan, Italy; Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, Italy.
    Kutty, Shelby
    University of Nebraska Medical Center, Division of Pediatric Cardiology, Children's Hospital & Medical Center, Omaha, NE, United States.
    Moons, Philip
    University of Leuven, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.
    Geographical variation and predictors of physical activity level in adults with congenital heart disease2019Inngår i: International Journal of Cardiology : Heart & Vasculature, E-ISSN 2352-9067, Vol. 22, s. 20-25Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Physical activity is important to maintain and promote health. This is of particular interest in patients with congenital heart disease(CHD) where acquired heart disease should be prevented. The World Health Organization (WHO) recommends a minimum of 2.5 h/week of physical activity exceeding 3 metabolic equivalents (METS) to achieve positive health effects. It is unknown whether physical activity levels (PAL) in adult CHD patients differ by country of origin.

    Methods

    3896 adults with CHD recruited from 15 countries over 5 continents completed self-reported instruments, including the Health Behaviour Scale (HBS-CHD), within the APPROACH-IS project. For each patient, we calculated whether WHO recommendations were achieved or not. Associated factors were investigated using Generalized Linear Mixed Models.

    Results

    On average, 31% reached the WHO recommendations but with a great variation between geographical areas (India: 10%–Norway: 53%). Predictors for physical activity level in line with the WHO recommendations, with country of residence as random effect, were male sex (OR 1.78, 95%CI 1.52–2.08), NYHA-class I (OR 3.10, 95%CI 1.71–5.62) and less complex disease (OR 1.46, 95%CI 1.16–1.83). In contrast, older age (OR 0.97, 95%CI 0.96–0.98), lower educational level (OR 0.41, 95%CI 0.26–0.64) and being unemployed (OR 0.57, 95%CI 0.42–0.77) were negatively associated with reaching WHO recommendations.

    Conclusions

    A significant proportion of patients with CHD did not reach the WHO physical activity recommendations. There was a large variation in physical activity level by country of origin. Based on identified predictors, vulnerable patients may be identified and offered specific behavioral interventions.

  • 25.
    Lu, Chun-Wei
    et al.
    Department of Pediatrics, , National Taiwan University Hospital, , Taipei (TWN).
    Wang, Jou-Kou
    Department of Pediatrics, , National Taiwan University Hospital, , Taipei (TWN)Department of Nursing, , National Taiwan University Hospital, , Taipe.
    Yang, Hsiao-Ling
    Department of Nursing, , National Taiwan University Hospital, , Taipei (TWN).
    Kovacs, Adrienne H
    Toronto Adult Congenital Heart Disease Program, Peter Munk Cardiac Center, University Health Network, University of Toronto, , Toronto, (CAN).
    Luyckx, Koen
    KU Leuven School Psychology and Development in Context, , KU Leuven, , Leuven (BEL).
    Ruperti-Repilado, Francisco Javier
    Center for Congenital Heart Disease , Department of Cardiology, , Inselspital ‐ Bern University Hospital, University of Bern, , Bern (CHE).
    Van De Bruaene, Alexander
    KU Leuven Department of Cardiovascular Sciences, , KU Leuven, , Leuven (BEL).
    Enomoto, Junko
    Department of Education, , Toyo University, , Tokyo, (JPN).
    Sluman, Maayke A.
    Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, , Amsterdam, (NLD).
    Jackson, Jamie L.
    Center for Biobehavioral Health, , Nationwide Children’s Hospital, , Columbus, (USA).
    Khairy, Paul
    Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, , Montreal, (CAN).
    Cook, Stephen C.
    Indiana University Health Adult Congenital Heart Disease Program, , Indianapolis (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, , Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), , Chennai (IND).
    Alday, Luis
    Division of Cardiology, , Hospital de Niños, , Córdoba (ARG).
    Oechslin, Erwin
    Toronto Adult Congenital Heart Disease Program, Peter Munk Cardiac Center, University Health Network, University of Toronto (CAN).
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, , Oslo University Hospital ‐ Rikshospitalet, , Oslo, (NOR).
    Dellborg, Mikael
    Institute of Medicine, , The Sahlgrenska Academy at University of Gothenburg, , Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Paediatrics, , Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, , Gothenburg (SWE).
    Johansson, Bengt
    Department of Public Health and Clinical Medicine, , Umeå University, , Umeå (SWE).
    Mackie, Andrew S.
    Division of Cardiology, , Stollery Children’s Hospital, University of Alberta, , Edmonton (CAN).
    Menahem, Samuel
    Monash Heart, Monash Medical Centre, Monash University, , Melbourne (AUS).
    Caruana, Maryanne
    Department of Cardiology, , Mater Dei Hospital, , Birkirkara Bypass (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, , Cincinnati, , OH (USA).
    Soufi, Alexandra
    Department of Cardiac Rehabilitation, , Médipôle Lyon‐Villeurbanne, , Lyon (FRA).
    Fernandes, Susan M.
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, , Palo Alto, , CA (USA).
    White, Kamila
    Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, , Saint Louis, , MO (USA).
    Callus, Edward
    Department of Biomedical Sciences for Health, , University of Milan, , Milan (ITA).
    Kutty, Shelby
    Adult Congenital Heart Disease Center University of Nebraska, Medical Center/Children’s Hospital and Medical Center, , Omaha, , NE Taussig Heart Center, Johns Hopkins School of Medicine, , Baltimore, , MD (USA).
    Apers, Silke
    KU Leuven Department of Public Health and Primary Care, , KU Leuven, , Leuven (BEL).
    Moons, Philip
    KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, Box 7001, B‐3000 Leuven, (BEL).
    Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries.2022Inngår i: Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease, ISSN 2047-9980, E-ISSN 2047-9980, Vol. 11, nr 9, artikkel-id e024993Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease. Methods and Results As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms. Conclusions HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception. Registration URL: https://clinicaltrials.gov; Unique identifier: NCT02150603.

  • 26.
    Lévesque, Valérie
    et al.
    Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
    Laplante, Laurence
    Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
    Shohoudi, Azadeh
    Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
    Apers, Silke
    KU Leuven Department of Public Health and Primary Care; University of Leuven, Leuven, Belgium (BEL).
    Kovacs, Adrienne H
    Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA (USA).
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, Belgium BEL); University of the Free State, UNIBS, Bloemfontein, South Africa (ZAF).
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern, Switzerland (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium (BEL); KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium (BEL)..
    Enomoto, Junko
    Department of Adult Congenital Heart Disease,Cardiovascular Center, Chiba, Chiba, Japan (JPN).
    Sluman, Maayke A
    Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands (NLD); Department of Cardiology, Jeroen Bosch Hospital, Hertogenbosch, Amsterdam, the Netherlands (NLD).
    Lu, Chun-Wei
    Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA (USA).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India (IND).
    Alday, Luis
    Monash University,Monash Medical Centre, Melbourne, Australia (AUS).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital–Rikshospitalet, Oslo, Norway (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA (USA).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France (FRA).
    Fernandes, Susan M
    Department of Pediatrics and Medicine, Palo Alto, California USA (USA).
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center, USA (USA); University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missour USA (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, Italy (ITA).
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE, USA (USA).
    Brouillette, Judith
    Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
    Casteigt, Benjamin
    Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
    Moons, Philip
    KU Leuven–University of Leuven, Leuven, Belgium (BEL); University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; University of Cape Town, Department of Paediatrics and Child Health, Cape Town, South Africa (ZAF).
    Khairy, Paul
    Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
    Implantable Cardioverter-Defibrillators and Patient-Reported Outcomes in Adults with Congenital Heart Disease: an International Study2020Inngår i: Heart Rhythm, ISSN 1547-5271, E-ISSN 1556-3871, Vol. 17, nr 5, s. 768-776Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are increasingly used to prevent sudden deaths in the growing population of adults with congenital heart disease (CHD). Yet, little is known about their impact on patient-reported outcomes (PROs).

    OBJECTIVE: We assessed and compared PROs in adults with CHD with and without ICDs.

    METHODS: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents.

    RESULTS: A total of 3,188 patients were included: 107 with ICDs and 3,081 weight-matched controls without ICDs. ICD recipients averaged 40.1±12.4 years of age, with >95% having moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviours did not differ significantly in patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56, P=0.011). Those with secondary compared to primary prevention indications had a significantly lower quality of life score (linear analogue scale 72.0±23.1 versus 79.2±13.0, P=0.047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (versus controls) from Switzerland, Argentina, Taiwan, and USA.

    CONCLUSIONS: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.

  • 27.
    Moons, Philip
    et al.
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven (BEL); Centre for Person-Centred Care (GPCC), Gothenburg ; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg; University of Cape Town, Department of Paediatrics and Child Health, (ZAF).
    Apers, Sike
    KU Leuven, Department of Public Health and Primary Care, KU Leuven (BEL).
    Kovacs, Adrienne H
    University Health Network, University of Toronto, Peter Munk Cardiac Centre, Toronto (CAN); Oregon Health & Science University, Knight Cardiovascular Institute, Portland, USA (USA).
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, (BEL).
    Enomoto, Junko
    Tokyo University, Department of Education, Tokyo, (JPN).
    Sluman, Maayke A
    Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, Amsterdam, (NLD); Department of Cardiology, Jeroen Bosch Hospital, Hertogenbosch, Amsterdam,(NLD).
    Wang, Jou-Kou
    Department of Pediatrics, National Taiwan University Hospital, Taipei, (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, (ARG).
    Oechslin, E
    University of Toronto, Toronto Congenital Cardiac Center for Adults, University Health Network, (CAN).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo, (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden .
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, (AUS).
    Caruana, Mayanne
    Department of Cardiology, Mater Dei Hospital, Malta (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA (USA).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, USA (USA).
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center, ; University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri USA (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, (ITA).
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE, USA (USA).
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, (BEL); University of the Free State, UNIBS, Bloemfontein, South Africa (ZAF).
    Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life2021Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 20, nr 1, s. 48-55Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. Aims: We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. Methods: APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13–91) and QoL was assessed by a linear analog scale (range 0–100). Results: The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. Conclusion: In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance. © The European Society of Cardiology 2020.

    Fulltekst (pdf)
    fulltext
  • 28.
    Moons, Philip
    et al.
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden..
    Kovacs, Adrienne H.
    University of Toronto, Peter Munk Cardiac Centre, University Health Network, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR, USA..
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Development in Context, Leuven, Belgium..
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital - Bern University Hospital, Bern, Switzerland..
    Budts, Werner
    University Hospitals Leuven, Division of Congenital and Structural Cardiology, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium..
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan..
    Sluman, Maayke A.
    Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands..
    Yang, Hsiao-Ling
    National Taiwan University, School of Nursing, College of MedicineTaipei, Taiwan.
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada..
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA..
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina..
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway..
    Dellborg, Mikael
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden..
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden. 16 Centre for Person-Centred Care (GPCC), UGothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine,Umeå, Sweden..
    Mackie, Andrew S.
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada.
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia..
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta..
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA..
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
    Fernandes, Susan M.
    Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA, USA.
    White, Kamila
    Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA..
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy..
    Kutty, Shelby
    Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE, USA..
    Van Bulck, Liesbet
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care,Leuven, Belgium..
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care,Leuven, Belgium..
    Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors2018Inngår i: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 251, s. 34-41Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AimsGeographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.Methods and resultsAssessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale–Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.ConclusionsThis international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.

  • 29.
    Moons, Philip
    et al.
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Development in Context, Leuven, Belgium.
    Dezutter, Jessie
    KU Leuven - University of Leuven, School Psychology and Development in Context, Leuven, Belgium.
    Kovacs, Adrienne H
    University of Toronto, Peter Munk Cardiac Centre, University Health Network, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR, USA.
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital - Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    KU Leuven - University of Leuven, Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Sluman, Maayke A
    Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands..
    Yang, Hsiao-Ling
    National Taiwan University, School of Nursing, College of Medicine, Taipei, Taiwan..
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
    Dellborg, Mikael
    University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital, Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada.
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices Civils de Lyon, Lyon, France.
    Fernandes, Susan M
    Stanford University School of Medicine, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, CA, USA.
    White, Kamila
    Washington University and Barnes Jewish Heart & Vascular Center, Adult Congenital Heart Disease Center, University of Missouri, Saint Louis, MO, USA.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy.
    Kutty, Shelby
    Center University of Nebraska Medical Center, Adult Congenital Heart Disease, Children's Hospital and Medical Center, Omaha, NE, USA.
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium..
    Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe.2018Inngår i: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 274, s. 93-99, artikkel-id S0167-5273(18)30967-7Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS: Religion and spirituality can be resources for internal strength and resilience, and may assist with managing life's challenges. Prior studies have been undertaken primarily in countries with high proportions of religious/spiritual people. We investigated (i) whether being religious/spiritual is an independent predictor of patient-reported outcomes (PROs) in a large international sample of adults with congenital heart disease, (ii) whether the individual level of importance of religion/spirituality is an independent predictor for PROs, and (iii) if these relationships are moderated by the degree to which the respective countries are religious or secular.

    METHODS AND RESULTS: APPROACH-IS was a cross-sectional study, in which 4028 patients from 15 countries were enrolled. Patients completed questionnaires to measure perceived health status; psychological functioning; health behaviors; and quality of life. Religion/spirituality was measured using three questions: Do you consider yourself religious or spiritual?; How important is religion, spirituality, or faith in your life?; and If religious, to what religion do you belong?. The country level of religiosity/secularity was appraised using data from the Gallup Poll 2005-2009. General linear mixed models, adjusting for patient characteristics and country differences were applied. Overall, 49.2% of patients considered themselves to be religious/spiritual. Being religious/spiritual and considering religion/spirituality as important in one's life was positively associated with quality of life, satisfaction with life and health behaviors. However, among patients living in more secular countries, religion/spirituality was negatively associated with physical and mental health.

    CONCLUSION: Religiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.

  • 30.
    Moons, Philip
    et al.
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium; Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, Belgium; University of the Free State, Unit for Professional Training and Service in the Behavioural Sciences, Bloemfontein, South Africa.
    Kovacs, Adrienne H
    University Health Network, University of Toronto, Peter Munk Cardiac Centre, Toronto, Canada; Oregon Health & Science University, Knight Cardiovascular Institute, Portland, OR, USA.
    Holbein, Christina E.
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, United States.
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern, Switzerland;KU Leuven, Department of Public Health and Primary Care, Leuven, Belgium.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium..
    Enomoto, Junko
    Department of Adult Congenital Heart Disease,Cardiovascular Center, Chiba, Chiba, Japan.
    Sluman, Maayke A
    Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands; Department of Cardiology, Jeroen Bosch Hospital, ’s Hertogenbosch, The Netherlands.
    Yang, Hsiao-Ling
    National Taiwan University, School of Nursing, College of Medicine, Taipei, Taiwan.
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada.
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA.
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo, Norway.
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden;Department of Paediatrics, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada.
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, USA.
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center, USA: University of Missouri, Barnes Jewish Heart and Vascular Center,USA.
    Callus, Edward
    Università degli Studi di Milano, Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy; Department of Biomedical Sciences for Health, Milan, Italy.
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE, USA.
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium.
    Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease2019Inngår i: Canadian Journal of Cardiology, ISSN 0828-282X, E-ISSN 1916-7075, Vol. 35, nr 12, s. 1842-1850, artikkel-id S0828-282X(19)31150-XArtikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: The prevalence and effects of cigarette smoking and cannabis use in persons with congenital heart disease (CHD) are poorly understood. We (1) described the prevalence of cigarette smoking, cannabis consumption, and co-use in adults with CHD; (2) investigated intercountry differences; (3) tested the relative effects on physical functioning, mental health, and quality of life (QOL); and (4) quantified the differential effect of cigarette smoking, cannabis use, or co-use on those outcomes.

    METHODS: APPROACH-IS was a cross-sectional study, including 4028 adults with CHD from 15 countries. Patients completed questionnaires to measure physical functioning, mental health, and QOL. Smoking status and cannabis use were assessed by means of the Health Behaviour Scale-Congenital Heart Disease. Linear models with doubly robust estimations were computed after groups were balanced with the use of propensity weighting.

    RESULTS: Overall, 14% of men and 11% of women smoked cigarettes only; 8% of men and 4% of women consumed cannabis only; and 4% of men and 1% of women used both substances. Large intercountry variations were observed, with Switzerland having the highest prevalence for smoking cigarettes (24% of men, 19% of women) and Canada the highest for cannabis use (19% of men, 4% of women). Cigarette smoking had a small negative effect on patient-reported outcomes, and the effect of cannabis was negligible. The effect of co-use was more prominent, with a moderate negative effect on mental health.

    CONCLUSIONS: We found significant intercountry variability in cigarette and cannabis use in adults with CHD. Co-use has the most detrimental effects on patient-reported outcomes.

  • 31.
    Moons, Philip
    et al.
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven,(BEL); Centre for Person-Centred Care (GPCC), Gothenburg, (SWE); University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, (SWE).
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, (BEL); University of the Free State, UNIBS, Bloemfontein, (ZAF).
    Thomet, Corina
    KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, (BEL);University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern,(CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, (BEL); KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven,( BEL).
    Enomoto, Junko
    Toyo University, Department of Education, Tokyo (JPN).
    Sluman, Maayke A
    Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, Amsterdam (NLD); Department of Cardiology, Jeroen Bosch Hospital, Hertogenbosch, Amsterdam (NLD).
    Lu, Chun-Wei
    National Taiwan University Children’s Hospital, Adult Congenital Heart Center, Taipei (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba(ARG).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg (SWE); Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg (SWE); University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå (SWE).
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH (USA).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care (USA).
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center, Seattle (USA); University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan (ITA).
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE (USA).
    Ombelet, Fouke
    KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven (BEL).
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven (BEL).
    Kovacs, Adrienne H
    Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario (CAN); Knight Cardiovascular Institute, Oregon Health & Science University, Portland,Oregon (USA).
    Physical Functioning, Mental Health, and Quality of Life in Different Congenital Heart Defects: Comparative Analysis in 3538 Patients From 15 Countries2021Inngår i: Canadian Journal of Cardiology, ISSN 0828-282X, E-ISSN 1916-7075, Vol. 37, nr 2, s. 215-223, artikkel-id S0828-282X(20)30317-2Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects.

    METHODS: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect.

    RESULTS: Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%).

    CONCLUSIONS: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.

  • 32.
    Moons, Philip
    et al.
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium(BEL); Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; University of Cape Town, Department of Paediatrics and Child Health, South Africa (ZAF).
    Luyckx, Koen
    KU Leuven School Psychology and Development in Context, KU Leuven, Leuven, Belgium (BEL); UNIBS, University of the Free State, Bloemfontein, South Africa (ZAF).
    Thomet, Corina
    KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium (BEL); Center for Congenital Heart Disease, Department of Cardiology, Inselspital - Bern University Hospital, University of Bern, Bern, Switzerland (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium (BEL); KU Leuven Department of Cardiovascular Sciences, KU Leuven, Leuven, Belgium (BEL).
    Enomoto, Junko
    Toyo University, Department of Education, Tokyo, Japan (JPN).
    Sluman, Maayke A
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, the Netherlands (NLD); Department of Cardiology, Jeroen Bosch Hospital, 's Hertogenbosch, the Netherlands (NLD).
    Wang, Jou-Kou
    National Taiwan University Hospital, Department of Pediatrics, Taipei, Taiwan (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, Michigan (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina (ARG).
    Oechslin, Erwin
    University of Toronto, Toronto Congenital Cardiac Center for Adults, Peter Munk Cardiac Center, University Health Network, Toronto, Canada (CAN).
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway (NOR).
    Dellborg, Mikael
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, .
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Paediatrics, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg,.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine,Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, (USA).
    Soufi, Alexandra
    Department of Cardiac Rehabilitation, Médipôle Lyon-Villeurbanne, Lyon, France (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, California (USA).
    White, Kamila
    Washington University, Adult Congenital Heart Disease Center (USA); University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, Italy (ITA).
    Kutty, Shelby
    University of Nebraska, Adult Congenital Heart Disease Center Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska (USA); Taussig Heart Center, Johns Hopkins School of Medicine, Baltimore, Maryland (USA).
    Apers, Silke
    KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium (BEL).
    Kovacs, Adrienne H
    University of Toronto, Toronto Congenital Cardiac Center for Adults, Peter Munk Cardiac Center, University Health Network, Toronto, Canada (CAN); Oregon Health & Science University, Knight Cardiovascular Institute, Portland, Oregon (USA).
    Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS).2021Inngår i: American Journal of Cardiology, ISSN 0002-9149, E-ISSN 1879-1913, Vol. 145, s. 135-142Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    In this international study, we (1) compared patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) who had versus had not been hospitalized during the previous 12 month, (2) contrasted PROs in patients who had been hospitalized for cardiac surgery versus nonsurgical reasons, (3) assessed the magnitude of differences between the groups (i.e., effect sizes), and (4) explored differential effect sizes between countries. APPROACH-IS was a cross-sectional, observational study that enrolled 4,028 patients from 15 countries (median age 32 years; 53% females). Self-report questionnaires were administered to measure PROs: health status; anxiety and depression; and quality of life. Overall, 668 patients (17%) had been hospitalized in the previous 12 months. These patients reported poorer outcomes on all PROs, with the exception of anxiety. Patients who underwent cardiac surgery demonstrated a better quality of life compared with those who were hospitalized for nonsurgical reasons. For significant differences, the effect sizes were small, whereas they were negligible in nonsignificant comparisons. Substantial intercountry differences were observed. For various PROs, moderate to large effect sizes were found comparing different countries. In conclusion, adults with CHD who had undergone hospitalization in the previous year had poorer PROs than those who were medically stable. Researchers ought to account for the timing of recruitment when conducting PRO research as hospitalization can impact results.

  • 33.
    Moons, Philip
    et al.
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000 Leuven, (BEL); Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, (SWE); Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, (SWE); Department of Paediatrics and Child Health, University of Cape Town, Cape Town, (ZAF).
    Luyckx, Koen
    School Psychology and Child and Adolescent Development, KU Leuven - University of Leuven, Leuven, (BEL); UNIBS, University of the Free State, Bloemfontein, (ZAF).
    Thomet, Corina
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000 Leuven (BEL); Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern, Bern (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, (BEL).
    Enomoto, Junko
    Department of Education, Toyo University, Tokyo (JPN).
    Sluman, Maayke A.
    Department of Cardiology, Amsterdam UMC, University of Amsterdam, Amsterdam; Department of Cardiology, Jeroen Bosch Hospital, ‘s Hertogenbosch (NLD).
    Yang, Hsiao Ling
    School of Nursing, College of Medicine, National Taiwan University, Taipei, (TWN).
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children’s Hospital, Columbus, OH (USA).
    Khairy, Paul
    dult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, (CAN).
    Cook, Stephen C.
    Adult Congenital Heart Disease Program, Indiana University Health, Indianapolis (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba (ARG).
    Oechslin, Erwin
    Toronto Adult Congenital Heart Disease Program, University Health Network, University of Toronto, Toronto (CAN).
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo (NOR).
    Dellborg, Mikael
    nstitute of Medicine, The Sahlgrenska Academy at University of Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg; Department of Paediatrics, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg (SWE).
    Johansson, Bengt
    Department of Public Health and Clinical Medicine, Umeå University, Umeå (SWE).
    Mackie, Andrew S.
    Division of Cardiology, Stollery Children’s Hospital, University of Alberta, Edmonton (CAN).
    Menahem, Samuel
    Monash Heart, Monash Medical Centre, Monash University, Melbourne (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, (USA).
    Soufi, Alexandra
    Department of Cardiac Rehabilitation, Médipôle Lyon-Villeurbanne, Lyon (FRA).
    Fernandes, Susan M.
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, Palo Alto (USA).
    White, Kamila
    Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan; Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan (ITA).
    Kutty, Shelby
    Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children’s Hospital and Medical Center, Omaha, NE; Taussig Heart Center, Johns Hopkins School of Medicine, Baltimore, (USA).
    Kovacs, Adrienne H.
    Toronto Adult Congenital Heart Disease Program, University Health Network, University of Toronto, Toronto, (CAN).
    Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS2022Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 22, nr 4, s. 339-344Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40-59 years and 18-39 years. Adjusted for demographic and medical characteristics, patients >= 60 years had a lower Physical Component Summary, higher Mental Component Summary, and lower anxiety (Hospital Anxiety and Depression Scale-Anxiety) scores than patients in the two younger categories. For satisfaction with life, older persons had a higher score than patients aged 40-59 years. Registration: ClinicalTrials.gov NCT02150603.

  • 34.
    Nilsson, S
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, Gothenburg (SWE).
    Mattson, J
    Red Cross University College, Institute of Health Care, Karolinska Institute, Department of Learning, Informatics, Management and Ethics, Stockholm (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. The Queen Silvia Children’s Hospital, Department of Pediatrics, Gothenburg (SWE).
    Brorsson, A-L
    Karolinska Institute, Department of Neurobiology, Care Sciences and Society, Huddinge (SWE).
    Forsner, M
    Karolinska Institute, Department of Biosciences and Nutrition, Stockholm (SWE);Umeå University, Department of Nursing, Umeå (SWE) .
    Jenholt Nolbris, M
    University of Gothenburg, Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, Gothenburg (SWE); The Queen Silvia Children’s Hospital, Department of Pediatrics, Gothenburg (SWE) .
    Kull, I
    Karolinska Institute, Department of Clinical Science and Education, Södersjukhuset, Stockholm (SWE)Sachs’ Children and Youth Hospital, Stockholm (SWE); .
    Lindholm Olinder, A
    Karolinska Institute, Department of Clinical Science and Education, Södersjukhuset, Stockholm (SWE); Sachs’ Children and Youth Hospital, Stockholm (SWE) .
    Ragnarsson, S
    Umeå University, Department of Nursing, Umeå (SWE); Umeå University, Institute of Epidemiology and Global Health and Institution of Care Science, Umeå (SWE).
    Rullander, A-C
    Umeå University, Department of Nursing, Umeå (SWE).
    Rydström, L-L
    Karolinska Institute, Department of Neurobiology, Care Sciences and Society, Huddinge (SWE).
    Andréia Garcia de Avila, M
    Botucatu Medical School - UNESP, Nursing Department, Botucatu (BRA).
    Olaya-Contreras, P
    University of Gothenburg, Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, Gothenburg (SWE).
    To be or not to be vaccinated against COVID-19 - The adolescents' perspective - A mixed-methods study in Sweden.2021Inngår i: Vaccine: X, ISSN 2590-1362, Vol. 9, artikkel-id 100117Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Vaccination of the population seems to be an important strategy in halting the COVID-19 pandemic in both local and global society. The aim of this study was to explore Swedish adolescents' willingness to be vaccinated against COVID-19 and its association with sociodemographic and other possible factors. A survey was distributed in Sweden between 7 July and 8 November 2020. The main qualitative question concerned adolescents' thoughts on vaccination against COVID-19 and evaluated whether the adolescents would like to be vaccinated when a COVID-19 vaccine is made available. In total, 702 adolescents aged between 15 and 19 responded to the questionnaire. A convergent parallel mixed-methods design was used. The results showed that nearly one in three adolescents had not decided if they wanted to get a COVID-19 vaccine, i.e. 30.5%: n = 214. Of the participants 54.3% (n = 381) were willing to be vaccinated. Girls had higher levels of anxiety about the vaccine compared to boys. In addition, high levels of anxiety impacted on the participants' willingness to be vaccinated. One reason for being undecided about the vaccine was that participants felt they did not know enough about it. Practising social distancing increased willingness to be vaccinated, as reflected in the qualitative results which showed participants wanted to be vaccinated to protect others. The results impart important knowledge to healthcare professionals and contribute to their communication with adolescents about vaccine hesitancy.

    Fulltekst (pdf)
    Vaccine X
  • 35.
    Pauli Bock, Emelie
    et al.
    Sahlgrenska University Hospital, Gothia Forum for Clinical Trials, Gothenburg (SWE).
    Nilsson, Stefan
    Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg (SWE).
    Jansson, Per-Anders
    Wallenberg Laboratory, Department of Molecular and Clinical Medicine, Institute of Medicine, University of Gothenburg (SWE).
    Wijk, Helle
    Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE); Quality and Patient Safety Unit, Sahlgrenska University Hospital, Gothenburg (SWE);Division of Building Design, Department of Architecture and Civil Engineering, Chalmers University of Technology, Gothenburg (SWE); Centre for Healthcare Architecture, CVA, Chalmers University of Technology, Gothenburg (SWE) .
    Alexiou, Eirini
    Center for Ethics, Law, and Mental Health (CELAM), Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE);Forensic Psychiatric Clinic, Sahlgrenska University Hospital, Gothenburg (SWE) .
    Lindahl, Göran
    Division of Building Design, Department of Architecture and Civil Engineering, Chalmers University of Technology, Gothenburg (SWE); Centre for Healthcare Architecture, CVA, Chalmers University of Technology, Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Degl'Innocenti, Alessio
    Sahlgrenska University Hospital, Gothia Forum for Clinical Trials, Gothenburg (SWE); Center for Ethics, Law, and Mental Health (CELAM), Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE).
    Literature Review: Evidence-Based Health Outcomes and Perceptions of the Built Environment in Pediatric Hospital Facilities.2021Inngår i: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 61, s. e42-e50, artikkel-id S0882-5963(21)00118-4Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PROBLEM: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff.

    ELIGIBILITY CRITERIA: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies.

    SAMPLE: Out of 1414 reviewed articles the result is based on eight included articles.

    RESULTS: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility.

    CONCLUSIONS: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn.

    IMPLICATIONS: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.

  • 36.
    Rassart, Jessica
    et al.
    University of Leuven, Leuven, Belgium; Research Foundation Flanders, Belgium.
    Apers, Silke
    University of Leuven, Leuven, Belgium.
    Kovacs, Adrienne H.
    University of Toronto, Toronto, Canada..
    Moons, Philip
    University of Leuven, Leuven, Belgium; University of Gothenburg, Gothenburg, Sweden.
    Thomet, Corina
    University Hospital Bern, Bern, Switzerland..
    Budts, Werner
    University of Leuven, Leuven, Belgium; University Hospitals Leuven, Leuven, Belgium.
    Enomoto, Junko
    Chiba Cardiovascular Center, Chiba, Japan..
    Sluman, Maayke A.
    Amsterdam Medical Center, Amsterdam, The Netherlands..
    Wang, Jou-Kou
    National Taiwan University Hospital, Taipei, Taiwan..
    Jackson, Jamie L.
    Nationwide Children's Hospital, Columbus, USA.
    Khairy, Paul
    Montreal Heart Institute, Montreal, Canada..
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital Grand Rapids, MI, USA..
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Alday, Luis
    Hospital de Niños, Córdoba, Argentina..
    Eriksen, Katrine
    Oslo University Hospital, Oslo, Norway..
    Dellborg, Mikael
    University of Gothenburg, Gothenburg, Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Gothenburg, Sweden.
    Johansson, Bengt
    University Hospital of Umeå, Umeå, Sweden.
    Rempel, Gwen R.
    University of Alberta, Edmonton, Canada.
    Menahem, Samuel
    Monash Medical Center, Melbourne, Australia..
    Caruana, Maryanne
    Mater Dei Hospital, Msida, Malta.
    Veldtman, Gruschen
    Cincinnati Children's Hospital Medical Center, Cincinnati, USA..
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France..
    Fernandes, Susan M.
    Stanford University, Palo Alto, USA.
    White, Kamila S.
    Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, USA..
    Callus, Edward
    IRCCS Policlinco San Donato Hospital, Milan, Italy..
    Kutty, Shelby
    Children's Hospital & Medical Center, Omaha, USA.
    Luyckx, Koen
    University of Leuven, Leuven, Belgium.
    Illness perceptions in adult congenital heart disease: A multi-center international study2017Inngår i: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 244, s. 130-138Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes. Methods Our sample, taken from APPROACH-IS, consisted of 3258 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions and patient-reported outcomes (i.e., quality of life, perceived health status, and symptoms of depression and anxiety). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, functional class, and ethnicity. Linear mixed models were applied. Results The inter-country variation in illness perceptions was generally small, yet patients from different countries differed in the extent to which they perceived their illness as chronic and worried about their illness. Patient characteristics that were linked to illness perceptions were sex, age, employment status, CHD complexity, functional class, and ethnicity. Higher scores on consequences, identity, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, were associated with poorer patient-reported outcomes. Conclusions This study emphasizes that, in order to gain a deeper understanding of patients’ functioning, health-care providers should focus not only on objective indicators of illness severity such as the complexity of the heart defect, but also on subjective illness experiences.

  • 37.
    Sluman, Maayke A.
    et al.
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands; Department of Cardiology, Jeroen Bosch Hospital, ‘s Hertogenbosch, The Netherlands.
    Apers, Silke
    University of Leuven, Department of Development and Regeneration, KU Leuven, Leuven, Belgium; University of Leuven, Leuven, Department of Public Health and Primary Care, KU Leuven, Belgium.
    Sluiter, Judith K.
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands.
    Nieuwenhuijsen, Karen
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands.
    Moons, Philip
    University of Leuven, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; University of Gothenburg, Center for Person‐Centered Care (GPCC), Gothenburg, Sweden .
    Luyckx, Koen
    University of Leuven, School Psychology and Development in Context, KU Leuven, Leuven, Belgium ; University of the Free State, Department of Psychology, UNIBS, Bloemfontein, South Africa.
    Kovacs, Adrienne H.
    University Health Network, Department of Psychology, Toronto, Canada; Oregon Health & Science University, The Knight Cardiovascular Institute, Portland, Oregon .
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital, Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    Congenital and Structural Cardiology, Department of Cardiovascular Sciences, University Hospitals of Leuven, KU Leuven, Leuven, Belgium.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Yang, Hsiao-Ling
    National Taiwan University, School of Nursing, College of Medicine, Taipei, Taiwan.
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio.
    Khairy, Paul
    University of Montreal, Montreal Heart Institute, Montreal, Canada.
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, Michigan.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India.
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    9Department of Cardiology, Oslo University Hospital, Oslo, Norway.
    Dellborg, Mikael
    Gothenburg University, Institute of Medicine, Sahlgrenska Academy, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Center for Person‐Centered Care (GPCC), Gothenburg, Sweden.
    Mattsson, Eva
    Department of Cardiology, Karolinska University Hospital, Stockholm, Sweden.
    Mackie, Andrew S.
    University of Alberta, Department of Pediatric Cardiology, Edmonton, Canada.
    Menahem, Samuel
    Monash Medical Center, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Msida, Malta.
    Gosney, Kathy
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France.
    Fernandes, Susan M.
    Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, Palo Alto, California.
    White, Kamila S.
    Washington University, Adult Congenital Heart Disease Center, ; University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missour.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato Hospital, Milan, Italy.
    Kutty, Shelby
    Adult Congenital Heart Disease Center, University of Nebraska Medical Center/Children’s Hospital & Medical Center, Omaha, Nebraska.
    Bouma, Berto J.
    University of Amsterdam, Amsterdam UMC, Department of Cardiology, Amsterdam, The Netherlands.
    Mulder, Barbara J.M.
    University of Amsterdam, Amsterdam UMC, Department of Cardiology, Amsterdam, The Netherlands.
    Education as important predictor for successful employment in adults with congenital heart disease worldwide2019Inngår i: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 14, nr 3, s. 362-371Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background

    Conflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.

    Methods

    Data from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross-sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.

    Results

    Median age was 32 years (IQR 25-42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99-3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67-0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31-2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).

    Conclusions

    There are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.

  • 38.
    Sparud-Lundin, Carina
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy, Box 457, SE- 405 30, Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Box 457, SE- 405 30, Gothenburg, Sweden..
    Moons, Philip
    University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy, Box 457, SE- 405 30, Gothenburg, Sweden..
    Bratt, Ewa-Lena
    University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy, Box 457, SE- 405 30, Gothenburg, Sweden..
    Health care providers' attitudes towards transfer and transition in young persons with long term illness: a web-based survey2017Inngår i: BMC Health Services Research, E-ISSN 1472-6963, Vol. 17, nr 1, artikkel-id 260Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Transition programs in health care for young persons with special health care needs aim to maximize lifelong functioning. Exploring health care professionals' perspective may increase the possibility of successful implementation of transition programs. The aim was to survey health care professionals' attitudes towards components and barriers on transition and transfer in young people with long-term medical conditions with special health care needs.

    METHODS: A cross-sectional web-based survey was sent by e-mail to 529 physicians and nurses in Swedish pediatric and adult outpatient clinics. Response rate was 38% (n = 201). The survey consisted of 59 questions regarding different aspects of components and barriers on transition and transfer. Descriptive statistics were computed to summarize demographic data and categorized responses. The Chi square test was used for comparison between proportions of categories.

    RESULTS: Most respondents agreed on the destinations of care for adolescents within their specialty. Age and psychosocial aspects such as maturity and family situations were considered the most important initiators for transfer. Joint meeting with the patient (82%); presence of a transition coordinator (76%) and a written individualized transfer plan (55%) were reported as important transition components. Pediatric care professionals found the absence of a transition coordinator to be more of a transition barrier than adult care professionals (p = 0.018) and also a more important transfer component (p = 0.017). Other barriers were lack of funding (45%) and limited clinical space (19%). Transition programs were more common in university hospitals than in regional hospitals (12% vs 2%, p = <0.001) as well as having a transition coordinator (12% vs 3%, p = 0.004).

    CONCLUSION: The findings highlight a willingness to work on new transition strategies and provide direction for improvement, taking local transition components as well as potential barriers into consideration when implementing future transition programs. Some differences in attitudes towards transitional care remain among pediatric and adult care professionals.

  • 39.
    Svensson, Birgitta
    et al.
    Department of Cardiology, Pediatric Heart Center, Skåne University Hospital, Lund (SWE); Department of Clinical Sciences Lund, Pediatrics, Lund University, Lund (SWE).
    Liuba, Petru
    Department of Cardiology, Pediatric Heart Center, Skåne University Hospital, Lund (SWE); Department of Clinical Sciences Lund, Pediatrics, Lund University, Lund (SWE).
    Wennick, Anne
    Department of Care Science, Faculty of Health and Society, Malmö University, Malmö (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Paediatrics, The Queen Silvia Children’s Hospital, Gothenburg (SWE).
    “I Dread the Heart Surgery but it Keeps My Child Alive”: Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation2023Inngår i: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 18, nr 3, s. 349-359Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Parents of children with complex right ventricular outflow tract (RVOT) anomalies are con-fronted with their child’s need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reo-peration. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis resulted in the following five main coexisting themes: The heart surgery keeps my child alive illuminates parents’ experiences during and after the assessment and emphasizes that heart surgery, although dreaded, is central for their child’s survival; Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition; the remaining three themes, Unconditional love, Trust in life, and Togetherness, illuminate the ways in which the parents gained inner strength and confidence in their everyday lives. Conclusion: Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused, they experi-enced several distressing situations during the assessment process that should be addressed. By inviting both the parents and their child to participate in the child’s care, individualized support can take into account the needs of both parents and child. © 2023, Tech Science Press. All rights reserved.

    Fulltekst (pdf)
    fulltext
  • 40.
    Svensson, Birgitta
    et al.
    Department of Cardiology, Pediatric Heart Center, Skåne University Hospital, Lund, Lund University, Lund, (SWE).
    Liuba, Petru
    Department of Cardiology, Pediatric Heart Center, Skåne University Hospital, Lund, Lund University, Lund, (SWE).
    Wennick, Anne
    Department of Care Science, Faculty of Health and Society, Malmö University, Malmö (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    "The only thing I wonder is when I will have surgery again": everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery2023Inngår i: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 33, nr 3, s. 396-401Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Many children with complex right ventricle outflow tract anomalies such as Tetralogy of Fallot, common arterial trunk, and pulmonary atresia with ventricular septal defect require repeated heart surgeries early in life, but also later throughout their lifetime, thereby emphasising the importance of careful life-long follow-up. The need for repeated heart surgeries during childhood is recognised as a heavy burden on the child. Optimising the time point for re-intervention is important, since delaying re-intervention for these children can lead to complications such as ventricular arrhythmias, heart failure, and death. To this purpose, thorough pre-operative assessment (henceforth named as assessment) including clinical examination, echocardiography, MRI, and exercise test need to be performed whenever the indication for reoperation is suspected. It is likely to believe that children who are going through this kind of assessment that may lead to heart surgery need extra support. According to previous research, children with complex heart disease fear for the possibility of surgery and the thought of future repeated heart surgery is associated with anxiety. This might have an impact on children's everyday life and in research nowadays involving children with CHD, the focus has changed from survival to how these children experience their everyday life. Earlier studies have shown that they experience physical activities limitation and feelings of isolation, but no study has yet studied how children with right ventricle outflow tract anomalies experience their everyday life. To be able to provide support, studies are needed to explore how these children experience the period from assessment to decision, as well as the months thereafter. Therefore, the aim of this study was to explore how children diagnosed with complex right ventricle outflow tract anomalies experience their heart disease and their everyday life during the assessment and after the decision on whether to perform a new cardiac surgery.

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  • 41.
    Van Bulck, Liesbet
    et al.
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000, Leuven, Belgium (BEL); Research Foundation Flanders (FWO), Brussels, Belgium (BEL).
    Goossens, Eva
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000, Leuven, Belgium (BEL); Research Foundation Flanders (FWO), Brussels, Belgium; University of Antwerp,Division of Nursing and Midwifery, Faculty of Medicine and Health Sciences, Centre for Research and Innovation in Care, Antwerp, Belgium (BEL).
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, Belgium (BEL); University of the Free State, UNIBS, Bloemfontein, South Africa (ZAF).
    Apers, Silke
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium (BEL).
    Oechslin, Erwin
    Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada (CAN).
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital - Bern University Hospital, Bern, Switzerland (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium (BEL); KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium (BEL).
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan (JPN).
    Sluman, Maayke A
    Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands (NLD).
    Lu, Chun-Wei
    National Taiwan University Children’s Hospital, Adult Congenital Heart Center, Taiwan (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina (ARG).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo, Norway (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA (USA).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, USA (USA).
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center ; University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri USA (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, Italy (ITA).
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE, USA (USA).
    Moons, Philip
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven, Belgium (BEL); Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; University of Cape Town, Department of Paediatrics and Child Health, Cape Town, South Africa (ZAF).
    Healthcare system inputs and patient-reported outcomes: a study in adults with congenital heart defect from 15 countries2020Inngår i: BMC Health Services Research, E-ISSN 1472-6963, Vol. 20, nr 1, artikkel-id 496Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease.

    METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.

    RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed.

    CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn.

    TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.

  • 42.
    Van Bulck, Lisbet
    et al.
    KU Leuven – University of Leuven, Department of Public Health and Primary Care, Belgium.
    Luyckx, Koen
    KU Leuven – University of Leuven, School Psychology and Development in Context, Belgium; UNIBS, University of the Free State, South Africa.
    Goossens, Eva
    KU Leuven – University of Leuven, Department of Public Health and Primary Care,Belgium; Research Foundation Flanders (FWO), Belgium; Division of Congenital and Structural Cardiology, University Hospitals Leuven, Belgium .
    Apers, Silke
    KU Leuven – University of Leuven, Department of Public Health and Primary Care, Belgium.
    Kovacs, Adrienne. H.
    University of Toronto, Peter Munk Cardiac Centre, Canada; Oregon Health & Science University, Knight Cardiovascular Institute, USA .
    Thomet, Corina
    Center for Congenital Heart Disease, Bern University Hospital, Switzerland.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Belgium ; KU Leuven – University of Leuven, Department of Cardiovascular Sciences,Belgium .
    Sluman, Maayke A.
    Department of Cardiology, Academic Medical Center, The Netherlands; Department of Cardiology, Jeroen Bosch Hospital, The Netherlands; Coronel Institute for Occupational Health, Academic Medical Centre, The Netherlands.
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital – Rikshospitalet, Norway.
    Dellborg, Mikael
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Sweden.
    Caruana, Mayanne
    Department of Cardiology, Mater Dei Hospital, Malta.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, France.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Italy; Università degli Studi di Milano, Department of Biomedical Sciences for Health, Italy .
    Moons, Philip
    KU Leuven – University of Leuven, Department of Public Health and Primary Care, Belgium; University of Gothenburg, Institute of Health and Care Sciences, Sweden; Department of Paediatrics and Child Health, University of Cape Town, South Africa .
    Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance2019Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, nr 6, s. 465-473Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries' healthcare system performance are of importance for patient-reported outcomes.

    Aims: The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease.

    Methods: A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.

    Results: Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes.

    Conclusion: Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.

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