Publications by authors named "Malin Berghammer"

37 Publications

Literature review: Evidence-based health outcomes and perceptions of the built environment in pediatric hospital facilities.

J Pediatr Nurs 2021 Apr 16. Epub 2021 Apr 16.

Sahlgrenska University Hospital, Gothia Forum for Clinical Trials, Gothenburg, Sweden; Center for Ethics, Law, and Mental Health (CELAM), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

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

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

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

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

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

Implications: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.
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http://dx.doi.org/10.1016/j.pedn.2021.04.013DOI Listing
April 2021

Enablers and barriers for being physically active: experiences from adults with congenital heart disease.

Eur J Cardiovasc Nurs 2020 Oct 30. Epub 2020 Oct 30.

Department of Public Health and Clinical Medicine, Umeå University, Sweden.

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.
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http://dx.doi.org/10.1177/1474515120963314DOI Listing
October 2020

Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: A report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group.

Eur Heart J Qual Care Clin Outcomes 2021 Feb 4. Epub 2021 Feb 4.

Children's National Hospital, United States.

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

Methods And Results: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: 1) develop a working group representative of all CHD stakeholders; 2) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; 3) create the outcome set using a series of multi-round Delphi processes; and 4) disseminate set worldwide. The WG established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form.

Conclusion: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.
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http://dx.doi.org/10.1093/ehjqcco/qcab009DOI Listing
February 2021

Phenotypes of adults with congenital heart disease around the globe: a cluster analysis.

Health Qual Life Outcomes 2021 Feb 10;19(1):53. Epub 2021 Feb 10.

KU Leuven Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium.

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

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

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

Conclusions: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.
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http://dx.doi.org/10.1186/s12955-021-01696-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7877115PMC
February 2021

Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS).

Am J Cardiol 2021 04 15;145:135-142. Epub 2021 Jan 15.

Toronto Congenital Cardiac Center for Adults, Peter Munk Cardiac Center, University Health Network, University of Toronto, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon.

In this international study, we (1) compared patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) who had versus had not been hospitalized during the previous 12 month, (2) contrasted PROs in patients who had been hospitalized for cardiac surgery versus nonsurgical reasons, (3) assessed the magnitude of differences between the groups (i.e., effect sizes), and (4) explored differential effect sizes between countries. APPROACH-IS was a cross-sectional, observational study that enrolled 4,028 patients from 15 countries (median age 32 years; 53% females). Self-report questionnaires were administered to measure PROs: health status; anxiety and depression; and quality of life. Overall, 668 patients (17%) had been hospitalized in the previous 12 months. These patients reported poorer outcomes on all PROs, with the exception of anxiety. Patients who underwent cardiac surgery demonstrated a better quality of life compared with those who were hospitalized for nonsurgical reasons. For significant differences, the effect sizes were small, whereas they were negligible in nonsignificant comparisons. Substantial intercountry differences were observed. For various PROs, moderate to large effect sizes were found comparing different countries. In conclusion, adults with CHD who had undergone hospitalization in the previous year had poorer PROs than those who were medically stable. Researchers ought to account for the timing of recruitment when conducting PRO research as hospitalization can impact results.
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http://dx.doi.org/10.1016/j.amjcard.2020.12.088DOI Listing
April 2021

Enablers and barriers for being physically active: experiences from adults with congenital heart disease.

Eur J Cardiovasc Nurs 2020 Oct 30:1474515120963314. Epub 2020 Oct 30.

Department of Public Health and Clinical Medicine, Umeå University, Sweden.

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.
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http://dx.doi.org/10.1177/1474515120963314DOI Listing
October 2020

Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study.

Heart Rhythm 2021 May 19;18(5):793-800. Epub 2020 Sep 19.

Montreal Heart Institute, Université de Montréal, Montreal, Canada.

Background: Atrial arrhythmias (ie, intra-atrial reentrant tachycardia and atrial fibrillation) are a leading cause of morbidity and hospitalization in adults with congenital heart disease (CHD). Little is known about their effect on quality of life and other patient-reported outcomes (PROs) in adults with CHD.

Objective: The purpose of this study was to assess the impact of atrial arrhythmias on PROs in adults with CHD and explore geographic variations.

Methods: Associations between atrial arrhythmias and PROs were assessed in a cross-sectional study of adults with CHD from 15 countries spanning 5 continents. A propensity-based matching weight analysis was performed to compare quality of life, perceived health status, psychological distress, sense of coherence, and illness perception in patients with and those without atrial arrhythmias.

Results: A total of 4028 adults with CHD were enrolled, 707 (17.6%) of whom had atrial arrhythmias. After applying matching weights, patients with and those without atrial arrhythmias were comparable with regard to age (mean 40.1 vs 40.2 years), demographic variables (52.5% vs 52.2% women), and complexity of CHD (15.9% simple, 44.8% moderate, and 39.2% complex in both groups). Patients with atrial arrhythmias had significantly worse PRO scores with respect to quality of life, perceived health status, psychological distress (ie, depression), and illness perception. A summary score that combines all PRO measures was significantly lower in patients with atrial arrhythmias (-3.3%; P = .0006). Differences in PROs were consistent across geographic regions.

Conclusion: Atrial arrhythmias in adults with CHD are associated with an adverse impact on a broad range of PROs consistently across various geographic regions.
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http://dx.doi.org/10.1016/j.hrthm.2020.09.012DOI Listing
May 2021

Children's Anxiety and Factors Related to the COVID-19 Pandemic: An Exploratory Study Using the Children's Anxiety Questionnaire and the Numerical Rating Scale.

Int J Environ Res Public Health 2020 08 9;17(16). Epub 2020 Aug 9.

Institute of Health and Care Sciences, University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, 405 30 Gothenburg, Sweden.

The repercussions of the COVID-19 pandemic on children's lives deserve attention. This study aimed to assess the prevalence of anxiety among Brazilian children and its associated factors during social distancing during COVID-19. We used a cross-sectional design with an online survey from April to May 2020 in Brazil. We included children aged 6-12 years and their guardians. The Children's Anxiety Questionnaire (CAQ; scores 4-12) and the Numerical Rating Scale (NRS; scores 0-10) were used to measure anxiety. We enrolled 157 girls and 132 boys, with a mean age of 8.84 (±2.05) years; 88.9% of respondents were mothers. Based on CAQ ≥ 9, the prevalence of anxiety was 19.4% (n = 56), and higher among children with parents with essential jobs and those who were social distancing without parents. In logistic regression, the following variables were associated with higher CAQ scores: social distancing without parents; more persons living together in home; and education level of guardians. Based on NRS > 7, the prevalence of anxiety was 21.8% (n = 63); however, no associations with NRS scores were found with the investigated variables. These findings suggest the necessity of implementing public health actions targeting these parents and their children at the population level.
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http://dx.doi.org/10.3390/ijerph17165757DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7459447PMC
August 2020

Physical Functioning, Mental Health, and Quality of Life in Different Congenital Heart Defects: Comparative Analysis in 3538 Patients From 15 Countries.

Can J Cardiol 2021 Feb 6;37(2):215-223. Epub 2020 Apr 6.

Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA.

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

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

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

Conclusions: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.
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http://dx.doi.org/10.1016/j.cjca.2020.03.044DOI Listing
February 2021

Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life.

Eur J Cardiovasc Nurs 2021 02;20(1):48-55

KU Leuven School Psychology and Development in Context, KU Leuven, Belgium.

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.
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http://dx.doi.org/10.1177/1474515120930496DOI Listing
February 2021

Healthcare system inputs and patient-reported outcomes: a study in adults with congenital heart defect from 15 countries.

BMC Health Serv Res 2020 Jun 3;20(1):496. Epub 2020 Jun 3.

KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000, Leuven, Belgium.

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

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

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

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

Trial Registration: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.
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http://dx.doi.org/10.1186/s12913-020-05361-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7268498PMC
June 2020

Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease.

Can J Cardiol 2019 12 14;35(12):1842-1850. Epub 2019 Aug 14.

Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.

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

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

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

Conclusions: We found significant intercountry variability in cigarette and cannabis use in adults with CHD. Co-use has the most detrimental effects on patient-reported outcomes.
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http://dx.doi.org/10.1016/j.cjca.2019.07.635DOI Listing
December 2019

Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study.

Heart Rhythm 2020 May 30;17(5 Pt A):768-776. Epub 2019 Nov 30.

Montreal Heart Institute, Université de Montréal, Montreal, Canada.

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

Objective: The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs.

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

Results: A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 ± 12.4 years, and >95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 ± 23.1 vs 79.2 ± 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States.

Conclusion: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.
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http://dx.doi.org/10.1016/j.hrthm.2019.11.026DOI Listing
May 2020

Health behaviours reported by adults with congenital heart disease across 15 countries.

Eur J Prev Cardiol 2020 07 17;27(10):1077-1087. Epub 2019 Sep 17.

Department of Public Health and Primary Care, KU Leuven - University of Leuven, Belgium.

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 ( = 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.
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http://dx.doi.org/10.1177/2047487319876231DOI Listing
July 2020

Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study.

J Psychosom Res 2019 09 5;124:109762. Epub 2019 Jul 5.

Department of Internal Medicine, Division of Cardiology, The University of Texas Southwestern Medical Center, Dallas, TX, USA. Electronic address:

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.
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http://dx.doi.org/10.1016/j.jpsychores.2019.109762DOI Listing
September 2019

Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation.

Am J Cardiol 2019 07 10;124(1):144-150. Epub 2019 Apr 10.

The University of Texas Southwestern Medical Center, Dallas, Texas. Electronic address:

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 (M = 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.
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http://dx.doi.org/10.1016/j.amjcard.2019.03.039DOI Listing
July 2019

Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance.

Eur J Cardiovasc Nurs 2019 08 26;18(6):465-473. Epub 2019 Feb 26.

1 Department of Public Health and Primary Care, KU Leuven - University of Leuven, Belgium.

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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http://dx.doi.org/10.1177/1474515119834484DOI Listing
August 2019

Education as important predictor for successful employment in adults with congenital heart disease worldwide.

Congenit Heart Dis 2019 May 4;14(3):362-371. Epub 2019 Feb 4.

Amsterdam UMC, Department of Cardiology, University of Amsterdam, Amsterdam, The Netherlands.

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.
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http://dx.doi.org/10.1111/chd.12747DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6849520PMC
May 2019

Geographical variation and predictors of physical activity level in adults with congenital heart disease.

Int J Cardiol Heart Vasc 2019 Mar 22;22:20-25. Epub 2018 Nov 22.

Department of Public Health and Primary Care, KU Leuven, University of Leuven, Leuven, Belgium.

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.
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http://dx.doi.org/10.1016/j.ijcha.2018.11.004DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6257939PMC
March 2019

Physical Activity-Related Drivers of Perceived Health Status in Adults With Congenital Heart Disease.

Am J Cardiol 2018 10 17;122(8):1437-1442. Epub 2018 Jul 17.

KU Leuven Department of Public Health and Primary Care, KU Leuven-University of Leuven, Leuven, Belgium; Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden.

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.
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http://dx.doi.org/10.1016/j.amjcard.2018.06.056DOI Listing
October 2018

Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe.

Int J Cardiol 2019 Jan 23;274:93-99. Epub 2018 Jul 23.

KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.

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.
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http://dx.doi.org/10.1016/j.ijcard.2018.07.103DOI Listing
January 2019

It's like balancing on a slackline-A description of how adults with congenital heart disease describe themselves in relation to physical activity.

J Clin Nurs 2018 Aug;27(15-16):3131-3138

Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.

Aims And Objectives: To illuminate how adults with congenital heart disease (CHD) describe themselves in relation to physical activity.

Background: Several studies have shown that adults with 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 semistructured interviews analysed with qualitative content analysis.

Methods: Semistructured interviews were individually performed with 14 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: (a) Being an adventurer-enjoying the challenges of physical activity; (b) Being a realist-adapting to physical ability; (c) Being a non-doer-lacking prerequisites for physical activity; and (d) Being an outsider-feeling excluded depending on physical ability.

Conclusions: Adults with CHD seem to have a diverse relationship with 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 to get a deeper understanding of how to support adults with CHD to be physically active.

Relevance To Clinical Practice: Given the diverse relationship with physical activity, nurses have to further investigate the patients' relationship with physical activity, to support a healthy lifestyle. Nurses and allied health professionals should offer individualised exercise prescriptions and education about suitable physical activities in relation to physical ability.
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http://dx.doi.org/10.1111/jocn.14507DOI Listing
August 2018

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.

Congenit Heart Dis 2018 May 3;13(3):392-400. Epub 2018 Jan 3.

University of Alberta, Edmonton, Canada.

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.
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http://dx.doi.org/10.1111/chd.12583DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5993574PMC
May 2018

Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective.

Am Heart J 2017 Nov 2;193:55-62. Epub 2017 Aug 2.

Cincinnati Children's Hospital Medical Center, Cincinnati, OH. Electronic address:

Background: Impaired 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).

Methods: From 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.

Results: Patients 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.

Conclusions: Regional 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.
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http://dx.doi.org/10.1016/j.ahj.2017.07.019DOI Listing
November 2017

Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors.

Int J Cardiol 2018 Jan 21;251:34-41. Epub 2017 Oct 21.

KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.

Aims: Geographical 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 Results: Assessment 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.

Conclusions: This 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.
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http://dx.doi.org/10.1016/j.ijcard.2017.10.064DOI Listing
January 2018

Patient reported outcomes are associated with physical activity level in adults with congenital heart disease.

Int J Cardiol 2017 Sep;243:174-179

Department of Public Health and Clinical Medicine, Umeå University, Sweden.

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.
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http://dx.doi.org/10.1016/j.ijcard.2017.03.137DOI Listing
September 2017

Illness perceptions in adult congenital heart disease: A multi-center international study.

Int J Cardiol 2017 Oct 26;244:130-138. Epub 2017 Jun 26.

University of Leuven, Leuven, Belgium.

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.
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http://dx.doi.org/10.1016/j.ijcard.2017.06.072DOI Listing
October 2017

Health care providers' attitudes towards transfer and transition in young persons with long term illness- a web-based survey.

BMC Health Serv Res 2017 04 11;17(1):260. Epub 2017 Apr 11.

Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Box 457, SE- 405 30, Gothenburg, Sweden.

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.
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http://dx.doi.org/10.1186/s12913-017-2192-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5387272PMC
April 2017

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.

Pediatr Cardiol 2017 Jun 24;38(5):965-973. Epub 2017 Mar 24.

Department of Paediatrics, University of Malta Medical School, MSD 2090, Msida, Malta.

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.
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http://dx.doi.org/10.1007/s00246-017-1604-yDOI Listing
June 2017

Is being physically active the key to a good quality of life for patients living with Fontan circulation?

Authors:
Malin Berghammer

Acta Paediatr 2016 Nov;105(11):1257-1258

Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.

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http://dx.doi.org/10.1111/apa.13587DOI Listing
November 2016