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Kovacs, A. H., Luyckx, K., Thomet, C., Budts, W., Enomoto, J., Sluman, M. A., . . . Moons, P. (2024). Anxiety and Depression in Adults With Congenital Heart Disease. Journal of the American College of Cardiology, 83(3), 430-441
Open this publication in new window or tab >>Anxiety and Depression in Adults With Congenital Heart Disease
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2024 (English)In: Journal of the American College of Cardiology, ISSN 0735-1097, E-ISSN 1558-3597, Vol. 83, no 3, p. 430-441Article in journal (Refereed) Published
Abstract [en]

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

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

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

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

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

Place, publisher, year, edition, pages
Elsevier Inc., 2024
Keywords
adult; age distribution; anxiety disorder; Article; clinical feature; congenital heart disease; controlled study; demography; depression; disease classification; distress syndrome; female; health status; Hospital Anxiety and Depression Scale; human; major clinical study; male; New York Heart Association class; patient-reported outcome; prevalence; quality of life assessment; sex difference; social status; symptomatology
National Category
Nursing Cardiac and Cardiovascular Systems Psychology
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-21218 (URN)10.1016/j.jacc.2023.10.043 (DOI)38233017 (PubMedID)2-s2.0-85181800376 (Scopus ID)
Note

This work was supported by the Research Fund–KU Leuven (Leuven, Belgium) through grant OT/11/033, by the Swedish Heart-Lung Foundation (Sweden) through grant number 20130607, by the University of Gothenburg Centre for Person-Centered Care (Gothenburg, Sweden), by the Cardiac Children’s Foundation (Taiwan) through grant CCF2013_02, by the Research Foundation Flanders through grant 1159522N, and by the Ricerca Corrente funding from the Italian Ministry of Health to IRCCS Policlinico San Donato.

Available from: 2024-03-04 Created: 2024-03-04 Last updated: 2024-03-04
Bay, A., Berghammer, M., Burström, Å., Holstad, Y., Christersson, C., Dellborg, M., . . . Johansson, B. (2024). Symptoms during pregnancy in primiparous women with congenital heart disease.. Scandinavian Cardiovascular Journal, 58(1), Article ID 2302135.
Open this publication in new window or tab >>Symptoms during pregnancy in primiparous women with congenital heart disease.
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2024 (English)In: Scandinavian Cardiovascular Journal, ISSN 1401-7431, E-ISSN 1651-2006, Vol. 58, no 1, article id 2302135Article in journal (Refereed) Published
Abstract [en]

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

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

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

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

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Congenital heart disease, pregnancy, pregnancy symptoms, reproductive health
National Category
Obstetrics, Gynecology and Reproductive Medicine Cardiac and Cardiovascular Systems Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-21204 (URN)10.1080/14017431.2024.2302135 (DOI)38192047 (PubMedID)
Funder
Swedish Heart Lung Foundation
Note

CC-BY 4.0

This work was supported by the Swedish Heart-Lung Foundation, the Heart Foundation of Northern Sweden, the Swedish Children’s Heart Association, and the Swedish Heart and Lung Association.

Available from: 2024-03-04 Created: 2024-03-04 Last updated: 2024-03-04
Svensson, B., Liuba, P., Wennick, A. & Berghammer, M. (2023). “I Dread the Heart Surgery but it Keeps My Child Alive”: Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation. Congenital Heart Disease, 18(3), 349-359
Open this publication in new window or tab >>“I Dread the Heart Surgery but it Keeps My Child Alive”: Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation
2023 (English)In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 18, no 3, p. 349-359Article in journal (Refereed) Published
Abstract [en]

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

Keywords
children; everyday life; heart surgery; Parents; reflexive thematic analysis; right ventricular outflow tract anomalies
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-20718 (URN)10.32604/chd.2023.028391 (DOI)001075644600007 ()2-s2.0-85162622676 (Scopus ID)
Note

Funding Statement: This study was supported by the Pediatric Heart Center at Skåne University Hospital Lund and Lund University, and by the Swedish Children’s Heart Association.

CC BY

Available from: 2023-09-20 Created: 2023-09-20 Last updated: 2024-01-11Bibliographically approved
Svensson, B., Liuba, P., Wennick, A. & Berghammer, M. (2023). "The only thing I wonder is when I will have surgery again": everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery. Cardiology in the Young, 33(3), 396-401
Open this publication in new window or tab >>"The only thing I wonder is when I will have surgery again": everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery
2023 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 33, no 3, p. 396-401Article in journal (Refereed) Published
Abstract [en]

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

Keywords
Heart surgery, children
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-18283 (URN)10.1017/S1047951122000907 (DOI)000775661500001 ()35351230 (PubMedID)2-s2.0-85128447662 (Scopus ID)
Funder
Swedish Heart Lung Foundation
Note

This study was supported by Swedish Heart- and Lung Foundation (PL), the Pediatric Heart center at the Skåne University Hospital (BS), and Lund University (PL).

CC BY 4.0

Available from: 2022-04-14 Created: 2022-04-14 Last updated: 2024-01-12Bibliographically approved
Lu, C.-W., Wang, J.-K., Yang, H.-L., Kovacs, A. H., Luyckx, K., Ruperti-Repilado, F. J., . . . Moons, P. (2022). Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries.. Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease, 11(9), Article ID e024993.
Open this publication in new window or tab >>Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries.
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2022 (English)In: Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease, ISSN 2047-9980, E-ISSN 2047-9980, Vol. 11, no 9, article id e024993Article in journal (Refereed) Published
Abstract [en]

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

Keywords
adult congenital heart disease, heart failure, patient‐reported outcomes, quality of life
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-18398 (URN)10.1161/JAHA.121.024993 (DOI)000789861900032 ()35470715 (PubMedID)2-s2.0-85129781477 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

This work was supported by the Research Fund—KU Leuven (Leuven, Belgium) through grant OT/11/033 to K.L. and P.M.; by the Swedish Heart‐Lung Foundation (Sweden) through grant number 20130607 to M.D.; by the University of Gothenburg Centre for Person‐centred Care (Gothenburg, Sweden) to M.D. and P.M.; and by the Cardiac Children's Foundation (Taiwan) through grant CCF2013_02 to H.L.Y. Furthermore, this work was endorsed by and conducted in collaboration with the International Society for Adult Congenital Heart Disease.

Available from: 2022-09-28 Created: 2022-09-28 Last updated: 2022-10-31Bibliographically approved
Moons, P., Luyckx, K., Thomet, C., Budts, W., Enomoto, J., Sluman, M. A., . . . Kovacs, A. H. (2022). Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS [Letter to the editor]. European Journal of Cardiovascular Nursing, 22(4), 339-344
Open this publication in new window or tab >>Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS
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2022 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 22, no 4, p. 339-344Article in journal, Letter (Refereed) Published
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.

Place, publisher, year, edition, pages
Oxford University Press, 2022
Keywords
Aging; Functioning; Heart defects; congenital; Mental health; Patient-reported outcomes; Quality of life
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-19206 (URN)10.1093/eurjcn/zvac057 (DOI)000834304400001 ()2-s2.0-85161000595 (Scopus ID)
Note

This work was supported by the Research Fund – KU Leuven (Leuven, Belgium) through grant OT/11/033 to K.L. and P.M.; by the Swedish Heart-Lung Foundation (Sweden) through grant number 20130607 to M.D.; by the University of Gothenburg Centre for Person-centred Care (Gothenburg, Sweden) to M.D. and P.M.; and by the Cardiac Children’s Foundation (Taiwan) through grant CCF2013_02 to H.L.Y. Furthermore, this work was endorsed by and conducted in collaboration with the International Society for Adult Congenital Heart Disease.

This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/)

Available from: 2023-01-09 Created: 2023-01-09 Last updated: 2024-04-09Bibliographically approved
Jenholt Nolbris, M., Ragnarsson, S., Brorsson, A.-L. -., Garcia de Avila, M., Forsner, M., Kull, I., . . . Berghammer, M. (2022). Young children’s voices in an unlocked Sweden during the COVID-19 pandemic. Scandinavian Journal of Public Health, 50(6), 693-702
Open this publication in new window or tab >>Young children’s voices in an unlocked Sweden during the COVID-19 pandemic
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2022 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 50, no 6, p. 693-702Article in journal (Refereed) Published
Abstract [en]

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

Place, publisher, year, edition, pages
Sage Publications, 2022
Keywords
Anxiety; Child; Child, Preschool; Communicable Disease Control; COVID-19; Female; Humans; Male; Pandemics; SARS-CoV-2; Sweden; anxiety; child; communicable disease control; epidemiology; female; human; male; pandemic; preschool child; Sweden
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-19181 (URN)10.1177/14034948221108250 (DOI)000822087800001 ()35799462 (PubMedID)2-s2.0-85133939964 (Scopus ID)
Note

 CC-BY 4.0 

Available from: 2022-12-02 Created: 2022-12-02 Last updated: 2022-12-02
Casteigt, B., Samuel, M., Laplante, L., Shohoudi, A., Apers, S., Kovacs, A. H., . . . Khairy, P. (2021). Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm, 18(5), 793-800
Open this publication in new window or tab >>Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study
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2021 (English)In: Heart Rhythm, ISSN 1547-5271, E-ISSN 1556-3871, Vol. 18, no 5, p. 793-800Article in journal (Refereed) Published
Abstract [en]

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

Keywords
Atrial fibrillation, Congenital heart disease, Intra-atrial reentrant tachycardia, Patient-reported outcomes, Quality of life
National Category
Cardiac and Cardiovascular Systems Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-18186 (URN)10.1016/j.hrthm.2020.09.012 (DOI)000717466400021 ()32961334 (PubMedID)2-s2.0-85104281510 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Funding by:

KU Leuven (OT/11/033)

Cardiac Children's Foundation (Taiwan) (CCF2013_02)

University of Gothenburg Centre for Person-centred Care

(Swedish Heart-Lung Foundation)

Available from: 2022-03-28 Created: 2022-03-28 Last updated: 2022-04-12Bibliographically approved
Hummel, K., Whittaker, S., Sillett, N., Basken, A., Berghammer, M., Chalela, T., . . . Martin, G. R. (2021). 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.. European Heart Journal - Quality of Care and Clinical Outcomes, 7(4), 354-365
Open this publication in new window or tab >>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.
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2021 (English)In: European Heart Journal - Quality of Care and Clinical Outcomes, ISSN 2058-5225, E-ISSN 2058-1742, Vol. 7, no 4, p. 354-365Article in journal (Refereed) Published
Abstract [en]

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

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

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

Keywords
Congenital heart disease, Outcomes, Patient-reported outcomes
National Category
Cardiac and Cardiovascular Systems
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-17362 (URN)10.1093/ehjqcco/qcab009 (DOI)000684096600010 ()33576374 (PubMedID)2-s2.0-85107029085 (Scopus ID)
Available from: 2021-08-25 Created: 2021-08-25 Last updated: 2022-01-18Bibliographically approved
Bay, A., Lämås, K., Berghammer, M., Sandberg, C. & Johansson, B. (2021). Enablers and barriers for being physically active: experiences from adults with congenital heart disease. European Journal of Cardiovascular Nursing, 20(3), 276-284
Open this publication in new window or tab >>Enablers and barriers for being physically active: experiences from adults with congenital heart disease
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2021 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 20, no 3, p. 276-284Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Sage Publications, 2021
Keywords
Congenital heart disease, content analysis, healthcare professionals, physical activity, prevention
National Category
Cardiac and Cardiovascular Systems Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-16026 (URN)10.1177/1474515120963314 (DOI)000646298100012 ()2-s2.0-85094650837 (Scopus ID)
Funder
The Swedish Heart and Lung Association, E143-15Swedish Heart Lung Foundation, 20150579Region Västerbotten
Note

Funders:  Svensk sjuksköterskeförening

Available from: 2020-11-16 Created: 2020-11-16 Last updated: 2022-04-01Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4181-695x

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