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Ko, J. M., White, K. S., Kovacs, A. H., Tecson, K. M., Apers, S., Luyckx, K., . . . Cedars, A. M. (2019). Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study. Journal of Psychosomatic Research, 124, Article ID 109762.
Open this publication in new window or tab >>Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study
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2019 (English)In: Journal of Psychosomatic Research, ISSN 0022-3999, E-ISSN 1879-1360, Vol. 124, article id 109762Article in journal (Refereed) Published
Abstract [en]

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

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

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

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

Keywords
Adult congenital heart disease, Depression, Perceived health, Physical activity, Prognosis
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-14351 (URN)10.1016/j.jpsychores.2019.109762 (DOI)000483008100018 ()31443808 (PubMedID)2-s2.0-85069545097 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Funders: KU Leuven (OT/11/033); Cardiac Children's Foundation,Taiwan (CCF2013_02)

Available from: 2019-10-02 Created: 2019-10-02 Last updated: 2020-02-03Bibliographically approved
Sluman, M. A., Apers, S., Sluiter, J. K., Nieuwenhuijsen, K., Moons, P., Luyckx, K., . . . Mulder, B. J. .. (2019). Education as important predictor for successful employment in adults with congenital heart disease worldwide. Congenital Heart Disease, 14(3), 362-371
Open this publication in new window or tab >>Education as important predictor for successful employment in adults with congenital heart disease worldwide
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2019 (English)In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 14, no 3, p. 362-371Article in journal (Refereed) Published
Abstract [en]

Background

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

Methods

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

Results

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

Conclusions

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

Keywords
adult, congenital heart defects, disability, education, employment, work ability
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-13526 (URN)10.1111/chd.12747 (DOI)000471070900007 ()30714326 (PubMedID)2-s2.0-85065171458 (Scopus ID)
Note

First published: 04 February 2019

Available from: 2019-03-21 Created: 2019-03-21 Last updated: 2020-02-03Bibliographically approved
Larsson, L., Johansson, B., Sandberg, C., Apers, S., Kovacs, A. H., Luyckx, K., . . . Moons, P. (2019). Geographical variation and predictors of physical activity level in adults with congenital heart disease. International Journal of Cardiology : Heart & Vasculature, 22, 20-25
Open this publication in new window or tab >>Geographical variation and predictors of physical activity level in adults with congenital heart disease
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2019 (English)In: International Journal of Cardiology : Heart & Vasculature, E-ISSN 2352-9067, Vol. 22, p. 20-25Article in journal (Refereed) Published
Abstract [en]

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

Methods

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

Results

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

Conclusions

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

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Adult congenital heart disease, Physical activity level, Patient-reported outcome, Health-behaviour scale, Physical activity recommendation, Metabolic equivalent
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-13176 (URN)10.1016/j.ijcha.2018.11.004 (DOI)000462184100005 ()30511012 (PubMedID)2-s2.0-85056806669 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Funding:  Research Fund-KU Leuven, Leuven, Belgium (OT/11/033), Cardiac Children's Foundation, Taiwan (CCF2013_02).

Available from: 2018-12-03 Created: 2018-12-03 Last updated: 2020-02-04Bibliographically approved
Holbein, C. E., Peugh, J., Veldtman, G., Apers, S., Luyckx, K., Kovacs, A. H., . . . Moons, P. (2019). Health behaviours reported by adults with congenital heart disease across 15 countries. European Journal of Preventive Cardiology
Open this publication in new window or tab >>Health behaviours reported by adults with congenital heart disease across 15 countries
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2019 (English)In: European Journal of Preventive Cardiology, ISSN 2047-4873, E-ISSN 2047-4881Article in journal (Refereed) Epub ahead of print
Abstract [en]

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

Keywords
Heart defects, congenital, patient-reported outcome measures, health behaviour, risk factors, prevention
National Category
Nursing Public Health, Global Health, Social Medicine and Epidemiology
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-14682 (URN)10.1177/2047487319876231 (DOI)2-s2.0-85073960613 (Scopus ID)
Funder
Swedish Heart Lung Foundation, (20130607
Note

behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD); Funders: The Research Fund – KU Leuven (OT/11/033); Cardiac Children’s Foundation Taiwan (CCF2013_02); National Institutes of Health (T32HD068223)

Available from: 2019-11-05 Created: 2019-11-05 Last updated: 2020-01-27Bibliographically approved
Van Bulck, L., Luyckx, K., Goossens, E., Apers, S., Kovacs, A. H. H., Thomet, C., . . . Moons, P. (2019). Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. European Journal of Cardiovascular Nursing, 18(6), 465-473
Open this publication in new window or tab >>Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance
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2019 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, no 6, p. 465-473Article in journal (Refereed) Published
Abstract [en]

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

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

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

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

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

Keywords
Healthcare system performance, heart defect, congenital, health services accessibility, patient reported outcome measures
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-13738 (URN)10.1177/1474515119834484 (DOI)000477647400005 ()2-s2.0-85062451438 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Funders: KU Leuven (Leuven, Belgium) , OT/11/033;University of Gothenburg

Available from: 2019-03-21 Created: 2019-03-21 Last updated: 2020-02-03Bibliographically approved
Holbein, C. E., Veldtman, G. R., Moons, P., Kovacs, A. H., Luyckx, K., Apers, S., . . . Cedars, A. (2019). Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation. American Journal of Cardiology, 124(1), 144-150
Open this publication in new window or tab >>Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation
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2019 (English)In: American Journal of Cardiology, ISSN 0002-9149, E-ISSN 1879-1913, Vol. 124, no 1, p. 144-150Article in journal (Refereed) Published
Abstract [en]

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

Keywords
quality of life, fontan circulation, physical activity
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-13842 (URN)10.1016/j.amjcard.2019.03.039 (DOI)000474328300021 ()31030969 (PubMedID)2-s2.0-85064899686 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Funders: KU Leuven (OT/11/033); Cardiac Children's Foundation Taiwan: Taipei, Taiwan (CCF2013_02);

Available from: 2019-05-24 Created: 2019-05-24 Last updated: 2020-02-03Bibliographically approved
Moons, P., Luyckx, K., Kovacs, A. H., Holbein, C. E., Thomet, C., Budts, W., . . . Apers, S. (2019). Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease. Canadian Journal of Cardiology, 35(12), 1842-1850
Open this publication in new window or tab >>Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease
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2019 (English)In: Canadian Journal of Cardiology, ISSN 0828-282X, E-ISSN 1916-7075, Vol. 35, no 12, p. 1842-1850Article in journal (Refereed) Published
Abstract [en]

Background: The prevalence and effects of cigarette smoking and cannabis use in persons with congenital heart disease (CHD) are poorly understood. We (1) described the prevalence of cigarette smoking, cannabis consumption, and co-use in adults with CHD; (2) investigated intercountry differences; (3) tested the relative effects on physical functioning, mental health, and quality of life (QOL); and (4) quantified the differential effect of cigarette smoking, cannabis use, or co-use on those outcomes. Methods: APPROACH-IS was a cross-sectional study, including 4028 adults with CHD from 15 countries. Patients completed questionnaires to measure physical functioning, mental health, and QOL. Smoking status and cannabis use were assessed by means of the Health Behaviour Scale—Congenital Heart Disease. Linear models with doubly robust estimations were computed after groups were balanced with the use of propensity weighting. Results: Overall, 14% of men and 11% of women smoked cigarettes only; 8% of men and 4% of women consumed cannabis only; and 4% of men and 1% of women used both substances. Large intercountry variations were observed, with Switzerland having the highest prevalence for smoking cigarettes (24% of men, 19% of women) and Canada the highest for cannabis use (19% of men, 4% of women). Cigarette smoking had a small negative effect on patient-reported outcomes, and the effect of cannabis was negligible. The effect of co-use was more prominent, with a moderate negative effect on mental health. Conclusions: We found significant intercountry variability in cigarette and cannabis use in adults with CHD. Co-use has the most detrimental effects on patient-reported outcomes. © 2019 Canadian Cardiovascular Society

Keywords
adult; anxiety; Article; Canada; cannabis use; cigarette smoking; congenital heart disease; cross-sectional study; depression; female; human; life satisfaction; major clinical study; male; patient-reported outcome; questionnaire; Switzerland
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-14838 (URN)10.1016/j.cjca.2019.07.635 (DOI)000500935900029 ()2-s2.0-85075917363 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Funding: Research Fund—KU Leuven (Belgium) through grant OT/11/033.  University of Gothenburg Centre for Person-Centred Care (Sweden). Cardiac Children’s Foundation (Taiwan) through grant CCF2013_02 to H.L.Y.

Available from: 2020-01-29 Created: 2020-01-29 Last updated: 2020-01-30Bibliographically approved
Holbein, C. E., Fogleman, N. D., Hommel, K., Apers, S., Rassart, J., Moons, P., . . . Veldtman, G. (2018). A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation. Congenital Heart Disease, 13(3), 392-400
Open this publication in new window or tab >>A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation
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2018 (English)In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 13, no 3, p. 392-400Article in journal (Refereed) Published
Abstract [en]

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

Keywords
congenital heart disease, Fontan circulation, illness perceptions, quality of life
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-12145 (URN)10.1111/chd.12583 (DOI)000434637400008 ()29457362 (PubMedID)2-s2.0-85048272375 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20130607
Note

Version of record online: 18 February 2018

Funders: KU Leuven,  OT/11/033; University of Gothenburg Centre for Person-centered Care; Cardiac Children’s Foundation Taiwan, CCF2013_02;  the National Institutes of Health, T32HD068223

Available from: 2018-02-26 Created: 2018-02-26 Last updated: 2019-02-19Bibliographically approved
Bratt, E.-L., Burström, Å., Hanseus, K., Rydberg, A. & Berghammer, M. (2018). Do not forget the parents: Parents' concerns during transition to adult care for adolescents with congenital heart disease. Child Care Health and Development, 44(2), 278-284
Open this publication in new window or tab >>Do not forget the parents: Parents' concerns during transition to adult care for adolescents with congenital heart disease
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2018 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 44, no 2, p. 278-284Article in journal (Refereed) Published
Abstract [en]

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

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

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

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

Keywords
adolescence, chronic (health) condition, congenital heart disease, parenting, parents, transition
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-11805 (URN)10.1111/cch.12529 (DOI)000424230000014 ()28980341 (PubMedID)2-s2.0-85041634080 (Scopus ID)
Note

First published: 5 October 2017

Funders: The Swedish Children's Heart Association;  Göteborg barnklinikers forskningsfond 

Available from: 2017-11-23 Created: 2017-11-23 Last updated: 2019-02-18Bibliographically approved
Berghammer, M., Johansson, B., Mattson, E., Moons, P. & Dellborg, M. (2018). Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease. European Heart Journal, 39(Suppl 1), Article ID 2406.
Open this publication in new window or tab >>Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease
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2018 (English)In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, no Suppl 1, article id 2406Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

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

Keywords
congenital heart disease adult caregivers self-report
National Category
Nursing Cardiac and Cardiovascular Systems
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
urn:nbn:se:hv:diva-13732 (URN)10.1093/eurheartj/ehy565.2406 (DOI)000459824001478 ()
Funder
Swedish Heart Lung Foundation
Available from: 2019-03-21 Created: 2019-03-21 Last updated: 2019-10-21Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4181-695x

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