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  • 1.
    Bay, Annika
    et al.
    Umeå University, Public Health and Clinical Medicine, Umeå, Sweden.
    Berghammer, Malin
    University West, Department of Health Sciences, Section for nursing - graduate level.
    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 disease2018In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, no suppl_1, p. 1120-1121, article id ehy566.P5433Article in journal (Refereed)
    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).

  • 2.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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.2017In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 243, p. 174-179Article in journal (Refereed)
    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.

  • 3.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level.
    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 activity2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 15-16, p. 3131-3138Article in journal (Refereed)
    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.

  • 4.
    Berghammer, Malin
    University West, Department of Health Sciences, Section for nursing - graduate level. 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?2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 11, p. 1257-1258Article in journal (Other academic)
  • 5.
    Berghammer, Malin
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level. Sahlgrenska Academy, Institute of Medicine.
    Brink, Eva
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    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 Circulation2015In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 10, no 5, p. 403-412Article in journal (Refereed)
    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.

  • 6.
    Berghammer, Malin
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level.
    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 disease2018In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, no Suppl 1, article id 2406Article in journal (Refereed)
    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.

  • 7.
    Berghammer, Malin
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 Study2017In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, no 3, p. 427-434Article in journal (Refereed)
    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

  • 8.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 disease2018In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 44, no 2, p. 278-284Article in journal (Refereed)
    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.

  • 9.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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.2017In: Pediatric Cardiology, ISSN 0172-0643, E-ISSN 1432-1971, Vol. 38, no 5, p. 965-973Article in journal (Refereed)
    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.

  • 10.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 perspective2017In: American Heart Journal, ISSN 0002-8703, E-ISSN 1097-6744, Vol. 193, no Supplement C, p. 55-62Article in journal (Refereed)
    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.

  • 11.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 circulation2018In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 13, no 3, p. 392-400Article in journal (Refereed)
    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.

  • 12.
    Holbein, Christina E.
    et al.
    Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, United States.
    Peugh, James
    Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, United States.
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 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.
    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.
    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
    University of Amsterdam, Coronel Institute of Occupational Health, Netherlands; dam, Netherlands n.
    Lu, Chun-Wei
    National Taiwan University Children’s Hospital, Adult Congenital Heart Center, 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
    University West, Department of Health Sciences, Section for nursing - graduate level.
    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.
    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
    Clinical Psychology Service, IRCCS Policlinico San Donato, Italy ;Universita degli Studi di Milano,Department of Biomedical Sciences for Health, Italy.
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, USA;Taussig Heart Center, Johns Hopkins School of Medicine, USA.
    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, Sweden;University of Cape Town, Department of Paediatrics and Child Health, South Africa.
    Health behaviours reported by adults with congenital heart disease across 15 countries2019In: European Journal of Preventive Cardiology, ISSN 2047-4873, E-ISSN 2047-4881Article in journal (Refereed)
    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.

  • 13.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level.
    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 Circulation2019In: American Journal of Cardiology, ISSN 0002-9149, E-ISSN 1879-1913, Vol. 124, no 1, p. 144-150Article in journal (Refereed)
    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.

  • 14.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 study2019In: Journal of Psychosomatic Research, ISSN 0022-3999, E-ISSN 1879-1360, Vol. 124, article id 109762Article in journal (Refereed)
    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.

  • 15.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 Disease2018In: American Journal of Cardiology, ISSN 0002-9149, E-ISSN 1879-1913, Vol. 122, no 8, p. 1437-1442, article id S0002-9149(18)31423-1Article in journal (Refereed)
    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.

  • 16.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 disease2019In: International Journal of Cardiology : Heart & Vasculature, ISSN 2352-9067, Vol. 22, p. 20-25Article in journal (Refereed)
    Abstract [en]

    Background

    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.

  • 17.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 factors2018In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 251, p. 34-41Article in journal (Refereed)
    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.

  • 18.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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.2018In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 274, p. 93-99, article id S0167-5273(18)30967-7Article in journal (Refereed)
    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.

  • 19.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 study2017In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 244, p. 130-138Article in journal (Refereed)
    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.

  • 20.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 worldwide2019In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 14, no 3, p. 362-371Article in journal (Refereed)
    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.

  • 21.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 survey2017In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 17, no 1, article id 260Article in journal (Refereed)
    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.

  • 22.
    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
    University West, Department of Health Sciences, Section for nursing - graduate level. 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 performance2019In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, no 6, p. 465-473Article in journal (Refereed)
    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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