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  • 1.
    Bay, Annika
    et al.
    Umeå University, Department of Public Health and Clinica Medicine, Sweden.
    Lämås, Kristina
    Umeå University, Department of Nursing, Umeå, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Paediatrics, The Queen Silvia Children’s Hospital .
    Sandberg, Camilla
    Umeå University, Department of Public Health and Clinical Medicine, Sweden; Umeå University, Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Enablers and barriers for being physically active: experiences from adults with congenital heart disease2021Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 20, nr 3, s. 276-284Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

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

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

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

    Fulltekst (pdf)
    fulltext
  • 2.
    Brink, Eva
    et al.
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för specialistsjuksköterskeutbildning.
    Cliffordson, Christina
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för specialistsjuksköterskeutbildning.
    Herlitz, Johan
    Department of Cardiology, Sahlgrenska University Hospital.
    Karlson, Björn W.
    Medicine and Science, AstraZeneca R and D, Mölndal.
    Dimensions of the Somatic Health Complaints Questionnaire (SHCQ) in a sample of myocardial infarction patients2007Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 6, nr 1, s. 27-31Artikkel i tidsskrift (Fagfellevurdert)
  • 3.
    Fors, Andreas
    et al.
    University of Gothenburg, Institute of Health and Care Sciences,.
    Ulin, Kerstin
    University of Gothenburg, Institute of Health and Care Sciences,.
    Cliffordson, Christina
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för hälsa, kultur och pedagogik.
    Ekman, Inger
    University of Gothenburg, Institute of Health and Care Sciences,.
    Brink, Eva
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för vårdvetenskap på avancerad nivå. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg.
    The Cardiac Self-Efficacy scale, a useful tool to evaluate person-centred care.2015Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 14, nr 6, s. 536-543Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND:Cardiac self-efficacy is a person's belief in his/her ability to manage the challenges posed by a coronary disease, and its role has been evaluated in several coronary populations using the Cardiac Self-Efficacy Scale (CSE Scale). Self-efficacy has an important role in person-centred care, however there is a lack of appropriate instruments that evaluate person-centred interventions.AIM:The purpose of this study was to validate the CSE Scale by examining its psychometric properties as a first step in evaluating a person-centred care intervention in persons with acute coronary syndrome (ACS).METHODS:The study sample consisted of 288 persons (72 women, 216 men) who completed the Swedish version of the CSE Scale two months after hospitalisation for an ACS event. Construct validity was psychometrically evaluated using confirmatory factor analysis. Additionally, convergent and discriminant validity were tested using correlation analyses.RESULTS:The results revealed that the CSE Scale was represented by three dimensions (control symptoms, control illness and maintain functioning). The analyses also showed that the CSE Scale is suitable for providing a total summary score that represents a global cardiac self-efficacy dimension. Evaluation of convergent and discriminant validity showed the expected correlations.CONCLUSION:The CSE Scale is a valid and reliable measure when evaluating self-efficacy in patients with ACS. It also seems to be a useful tool to promote person-centred care in clinical practice since it may offer useful guidance in the dialogue with the patient in the common creation of a personal health plan.

  • 4.
    Fredriksson-Larsson, Ulla
    et al.
    Univ Gothenburg, Ctr Person Cent Care, Inst Hlth & Care Sci,.
    Brink, Eva
    Univ Gothenburg, Ctr Person Cent Care, Inst Hlth & Care Sci,.
    Alsén, Pia
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för vårdvetenskap på grundnivå. Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Associations between fatigue, symptom experiences and sleep quality after myocardial infarction2014Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 13, nr 1 suppl, s. S15-S15Artikkel i tidsskrift (Fagfellevurdert)
  • 5.
    Fredriksson-Larsson, Ulla
    et al.
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för vårdvetenskap på avancerad nivå.
    Lundgren-Nilsson, A.
    Univ Gothenburg, Inst Neurosci & Physiol, Ctr Person Centred Care.
    Cliffordson, Christina
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för hälsa, kultur och pedagogik.
    Alsen, Pia
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för vårdvetenskap på grundnivå.
    Brink, E.
    Univ Gothenburg, Inst Hlth & Care Sci, Ctr Person Centred Care.
    Measuring fatigue with the multidimensional fatigue inventory (MFI-20) in persons treated for myocardial infarction2012Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 11, nr 1suppl, s. S50-S50Artikkel i tidsskrift (Fagfellevurdert)
  • 6.
    Johansson, Ingvor
    et al.
    NU Hospital group, Department of Internal Medicine.
    Karlson, Björn W.
    Astra Zeneca R&D, Mölndal.
    Grankvist, Gunne
    Högskolan Väst, Institutionen för individ och samhälle, Avd för psykologi och organisationsstudier.
    Brink, Eva
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för specialistsjuksköterskeutbildning.
    Disturbed sleep, fatigue, anxiety and depression in myocardial infarction patients2010Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 9, nr 3, s. 175-180Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Disturbed sleep has been linked to increased morbidity, mortality and depression and worsened health-related quality of life in patients with chronic illness. Few studies of readjustment after coronary artery disease have explicitly focused on sleep disturbance. Aim: To explore associations between disturbed sleep, fatigue, anxiety and depression, and to assess to what extent fatigue four months post-MI could be explained. Method: The sample included 204 consecutive patients, ≤ 80 years of age who answered questionnaires about disturbed sleep, fatigue, anxiety and depression four months after MI. Results: The variables anxiety, depression and disturbed sleep were all associated with fatigue. The regression model accounted for 46% of the variance in fatigue with depression and disturbed sleep as predictors. Infarct size measured by conventional biochemical markers, left ventricle ejection fraction and history of previous MI were not correlated with disturbed sleep, fatigue, anxiety or depression. Conclusions: From knowledge about associations between disturbed sleep, fatigue, anxiety and depression after MI, cardiac nurses could be trained to observe such symptoms. Optimal care for sleep disturbance may include actions to reduce anxiety and depression as well as self-care advices about sleep hygiene in order to improve sleep quality and reduce fatigue. © 2009 European Society of Cardiology.

  • 7.
    Löfvenmark, Caroline
    et al.
    Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Cardiovascular Medicine.
    Mattiasson, Anne-Cathrine
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för specialistsjuksköterskeutbildning.
    Billing, Ewa
    Uppsala University Hospital, Department of Medical Sciences.
    Edner, Magnus
    Uppsala University Hospital, Department of Medical Sciences.
    Perceived loneliness and social support in patients with chronic heart failure2009Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 8, nr 4, s. 251-258Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Self-reported conditions have become increasingly important in patient care, and perceived loneliness and social relationships in patients with chronic heart failure (CHF) are not sufficiently investigated. Aim: The aim was to investigate perceived loneliness and social support in patients with CHF. Further, to investigate whether loneliness and social support might be associated with gender, age, healthcare utilization and mortality. Methods: One hundred and forty nine patients with CHF, hospitalised at least once during a 4-month period in 2006, completed a self-reported questionnaire including measurements about loneliness and social support. Healthcare utilization was assessed prospectively by frequency of readmissions and number of days hospitalised during 1 year. Results: Loneliness was reported by 29 (20%) participants. They were more often women (p < 0.001) and younger (p = 0.024). Patients who perceived loneliness had fewer social contacts (p = 0.033), reported lower occurrence of emotional contacts (p = 0.004), were less satisfied with social contacts and close relationships (p < 0.001). Those reporting loneliness had more days hospitalised (p = 0.044), and more readmissions to hospital (p = 0.027), despite not having more severe CHF. Conclusion: Loneliness is a health-related risk indicator in that patients with CHF who perceived loneliness have more healthcare utilization than those who do not report loneliness despite not having more severe CHF. © 2009 Elsevier B.V. All rights reserved.

  • 8.
    Moons, Philip
    et al.
    KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care, Leuven (BEL); Centre for Person-Centred Care (GPCC), Gothenburg ; University of Gothenburg, Institute of Health and Care Sciences, Gothenburg; University of Cape Town, Department of Paediatrics and Child Health, (ZAF).
    Apers, Sike
    KU Leuven, Department of Public Health and Primary Care, KU Leuven (BEL).
    Kovacs, Adrienne H
    University Health Network, University of Toronto, Peter Munk Cardiac Centre, Toronto (CAN); Oregon Health & Science University, Knight Cardiovascular Institute, Portland, USA (USA).
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, (BEL).
    Enomoto, Junko
    Tokyo University, Department of Education, Tokyo, (JPN).
    Sluman, Maayke A
    Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, Amsterdam, (NLD); Department of Cardiology, Jeroen Bosch Hospital, Hertogenbosch, Amsterdam,(NLD).
    Wang, Jou-Kou
    Department of Pediatrics, National Taiwan University Hospital, Taipei, (TWN).
    Jackson, Jamie L
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, (USA).
    Khairy, Paul
    Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, (CAN).
    Cook, Stephen C
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, (ARG).
    Oechslin, E
    University of Toronto, Toronto Congenital Cardiac Center for Adults, University Health Network, (CAN).
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital - Rikshospitalet, Oslo, (NOR).
    Dellborg, Mikael
    Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden .
    Mackie, Andrew S
    University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, (CAN).
    Menahem, Samuel
    Monash University, Monash Heart, Monash Medical Centre, Melbourne, (AUS).
    Caruana, Mayanne
    Department of Cardiology, Mater Dei Hospital, Malta (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA (USA).
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France (FRA).
    Fernandes, Susan M
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, USA (USA).
    White, Kamila S
    Washington University, Adult Congenital Heart Disease Center, ; University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missouri USA (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, (ITA).
    Kutty, Shelby
    University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE, USA (USA).
    Luyckx, Koen
    KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, (BEL); University of the Free State, UNIBS, Bloemfontein, South Africa (ZAF).
    Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life2021Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 20, nr 1, s. 48-55Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

    Fulltekst (pdf)
    fulltext
  • 9.
    Moons, Philip
    et al.
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000 Leuven, (BEL); Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, (SWE); Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, (SWE); Department of Paediatrics and Child Health, University of Cape Town, Cape Town, (ZAF).
    Luyckx, Koen
    School Psychology and Child and Adolescent Development, KU Leuven - University of Leuven, Leuven, (BEL); UNIBS, University of the Free State, Bloemfontein, (ZAF).
    Thomet, Corina
    KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000 Leuven (BEL); Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern, Bern (CHE).
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, (BEL).
    Enomoto, Junko
    Department of Education, Toyo University, Tokyo (JPN).
    Sluman, Maayke A.
    Department of Cardiology, Amsterdam UMC, University of Amsterdam, Amsterdam; Department of Cardiology, Jeroen Bosch Hospital, ‘s Hertogenbosch (NLD).
    Yang, Hsiao Ling
    School of Nursing, College of Medicine, National Taiwan University, Taipei, (TWN).
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children’s Hospital, Columbus, OH (USA).
    Khairy, Paul
    dult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, (CAN).
    Cook, Stephen C.
    Adult Congenital Heart Disease Program, Indiana University Health, Indianapolis (USA).
    Chidambarathanu, Shanthi
    Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai (IND).
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba (ARG).
    Oechslin, Erwin
    Toronto Adult Congenital Heart Disease Program, University Health Network, University of Toronto, Toronto (CAN).
    Eriksen, Katrine
    Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo (NOR).
    Dellborg, Mikael
    nstitute of Medicine, The Sahlgrenska Academy at University of Gothenburg (SWE).
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg; Department of Paediatrics, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg (SWE).
    Johansson, Bengt
    Department of Public Health and Clinical Medicine, Umeå University, Umeå (SWE).
    Mackie, Andrew S.
    Division of Cardiology, Stollery Children’s Hospital, University of Alberta, Edmonton (CAN).
    Menahem, Samuel
    Monash Heart, Monash Medical Centre, Monash University, Melbourne (AUS).
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass (MLT).
    Veldtman, Gruschen
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, (USA).
    Soufi, Alexandra
    Department of Cardiac Rehabilitation, Médipôle Lyon-Villeurbanne, Lyon (FRA).
    Fernandes, Susan M.
    Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, Palo Alto (USA).
    White, Kamila
    Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, (USA).
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Milan; Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan (ITA).
    Kutty, Shelby
    Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children’s Hospital and Medical Center, Omaha, NE; Taussig Heart Center, Johns Hopkins School of Medicine, Baltimore, (USA).
    Kovacs, Adrienne H.
    Toronto Adult Congenital Heart Disease Program, University Health Network, University of Toronto, Toronto, (CAN).
    Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS2022Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 22, nr 4, s. 339-344Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

  • 10.
    Nordqvist, L.
    et al.
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur.
    Thorn, S.
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur.
    Alsén, Pia
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för vårdvetenskap på grundnivå. Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Berndtsson, Ina
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för sjuksköterskeutbildning.
    Difficulties experienced by men during the first year after their myocardial infarction and fatigue2015Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 14, nr S1, s. S46-S46, artikkel-id 125Artikkel i tidsskrift (Fagfellevurdert)
  • 11.
    Van Bulck, Lisbet
    et al.
    KU Leuven – University of Leuven, Department of Public Health and Primary Care, Belgium.
    Luyckx, Koen
    KU Leuven – University of Leuven, School Psychology and Development in Context, Belgium; UNIBS, University of the Free State, South Africa.
    Goossens, Eva
    KU Leuven – University of Leuven, Department of Public Health and Primary Care,Belgium; Research Foundation Flanders (FWO), Belgium; Division of Congenital and Structural Cardiology, University Hospitals Leuven, Belgium .
    Apers, Silke
    KU Leuven – University of Leuven, Department of Public Health and Primary Care, Belgium.
    Kovacs, Adrienne. H.
    University of Toronto, Peter Munk Cardiac Centre, Canada; Oregon Health & Science University, Knight Cardiovascular Institute, USA .
    Thomet, Corina
    Center for Congenital Heart Disease, Bern University Hospital, Switzerland.
    Budts, Werner
    Division of Congenital and Structural Cardiology, University Hospitals Leuven, Belgium ; KU Leuven – University of Leuven, Department of Cardiovascular Sciences,Belgium .
    Sluman, Maayke A.
    Department of Cardiology, Academic Medical Center, The Netherlands; Department of Cardiology, Jeroen Bosch Hospital, The Netherlands; Coronel Institute for Occupational Health, Academic Medical Centre, The Netherlands.
    Eriksen, Katrine
    Department of Cardiology, Oslo University Hospital – Rikshospitalet, Norway.
    Dellborg, Mikael
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.
    Berghammer, Malin
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Gothenburg, Centre for Person-Centred Care (GPCC), Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Sweden.
    Caruana, Mayanne
    Department of Cardiology, Mater Dei Hospital, Malta.
    Soufi, Alexandra
    Department of Congenital Heart Disease, Louis Pradel Hospital, France.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato, Italy; Università degli Studi di Milano, Department of Biomedical Sciences for Health, Italy .
    Moons, Philip
    KU Leuven – University of Leuven, Department of Public Health and Primary Care, Belgium; University of Gothenburg, Institute of Health and Care Sciences, Sweden; Department of Paediatrics and Child Health, University of Cape Town, South Africa .
    Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance2019Inngår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, nr 6, s. 465-473Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

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

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

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

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

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