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Being physically active as an adult with congenital heart disease
Umeå University, Faculty of Medicine, Department of Nursing.ORCID iD: 0000-0001-6321-8240
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Due to advances in medical and surgical care adults with congenital heart disease (CHD) is a growing and aging population, that now outnumbers the children with CHD. In general, adults with CHD have reduced aerobic exercise capacity and nearly half of the patients do not reach current recommendations on physical activity. It is known that a low level of physical activity is associated with an increased risk for acquired cardiovascular disease. Studies has shown that adults with CHD are at the same, or even higher risk as the general population, for developing acquired cardiovascular disease.

Aim: The overall aim was to explore physical activity in adults with CHD with respect to associated factors, exercise self-efficacy and their own experiences.

Methods: This thesis is based on four papers. Paper I included 471 adults with CHD from three tertiary care centres in Sweden. The participants completed questionnaires measuring patient reported outcomes (e.g. SF-12) including physical activity level. Paper II was based on data from 79 adults with CHD from two tertiary care centers in Sweden and 42 matched controls. All participants completed questionnaires on exercise self-efficacy and quality of life, wore an activity monitor during four consecutive days and performed muscle endurance tests. Paper I and II were of cross-sectional design and analyses were done using logistic regression. In paper III and IV data were collected through structured interviews for 14 participants. They were asked about their experiences of being physically active (paper III), what they considered as physical activities, and their experiences of enablers and barriers to physical activity (paper IV). Qualitative content analysis was used in papers III and IV.

Results: Physical activity level (paper I) and exercise self-efficacy (paper II) were strongly associated with age where those over 40 years had a lower level of physical activity and lower exercise self-efficacy. Further, in paper I, it appeared that patient reported outcomes from SF-12 were strongly associated with physical activity level. In paper II, exercise self-efficacy was associated with performance in a muscle endurance tests. Paper III revealed an overall theme – It´s like balancing on a slackline that illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four themes: (1) Being an adventurer – enjoying the challenges of physical activity; (2) Being a realist – adapting to physical ability; (3) Being a non-doer – lacking prerequisites for physical activity and (4) Being an outsider – feeling excluded depending on physical ability. In paper IV, the analysis revealed a description of what adults with CHD consider to be physical activity and considered as enablers and barriers for physical activity. Four categories appeared; physical aspects, psychological aspects, psychosocial aspects and environmental aspects. In the psychosocial aspect, social support and encouragement in childhood to be physically active and no restrictions from e.g. parents, teachers and health care increased physical activity in adulthood.

Conclusions: Age, social support and accepting physical limitations seem to have an important impact regarding physical activity level and exercise self-efficacy. In contrast, the complexity of CHD and other medical factors appear to be of less importance for adults with CHD in relation to physical activity. In order to support adults with CHD to increase their physical activity and reach their full potential, it is important to explore and consider the various aspects that may affect physical activity in this population.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet , 2018. , p. 62
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1984
Keywords [en]
Adult congenital heart disease, congenital heart disease, heart defect, physical activity, exercise self-efficacy, muscle function, quality of life, nursing, interviews, content analysis, prevention
National Category
Nursing Cardiac and Cardiovascular Systems
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-152806ISBN: 978-91-7601-951-1 (print)OAI: oai:DiVA.org:umu-152806DiVA, id: diva2:1262042
Public defence
2018-12-07, Aulan, Vårdvetarhuset, Umeå, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-11-16 Created: 2018-11-09 Last updated: 2018-11-13Bibliographically approved
List of papers
1. Patient reported outcomes are associated with physical activity level in adults with congenital heart disease
Open this publication in new window or tab >>Patient reported outcomes are associated with physical activity level in adults with congenital heart disease
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2017 (English)In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 243, p. 174-179Article in journal (Refereed) Published
Abstract [en]

Background: In general, adults with congenital heart disease (CHD) have impaired exercise capacity, and approximately 50% do not reach current recommendations on physical activity. Herein we analysed factors associated with physical activity level (PAL) in adults with CHD by using patient-reported outcomes (PRO). Methods: Patients with CHD (n = 471) were randomly selected from the national register on CHD and categorized according to complexity of lesions -simple (n = 172, 39.1 +/- 14.6 years), moderate (n = 212, 39 +/- 14.1 years), and severe (n = 87, 31.7 +/- 10.7 years). 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 = 2.5 h/week, n = 192) and low (>= 3 METs <2.5 h/week, n = 279). Patients with low PAL were older (42.6 vs. 35.8 years, 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) andMental 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.

Place, publisher, year, edition, pages
Elsevier, 2017
Keywords
Adult congenital heart disease, Physical activity, Multicentre study, Adults, Heart defect, Congenital
National Category
Cardiac and Cardiovascular Systems Nursing
Identifiers
urn:nbn:se:umu:diva-138201 (URN)10.1016/j.ijcard.2017.03.137 (DOI)000406038100034 ()
Available from: 2017-08-21 Created: 2017-08-21 Last updated: 2018-11-09Bibliographically approved
2. Exercise self-efficacy in adults with congenital heart disease
Open this publication in new window or tab >>Exercise self-efficacy in adults with congenital heart disease
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2018 (English)In: International Journal of Cardiology: Heart and vasculature, E-ISSN 2352-9067, Vol. 18, p. 7-11Article in journal (Refereed) Published
Abstract [en]

Background: Physical activity improves health, exercise tolerance and quality of life in adults with congenital heart disease (CHD), and exercise training is in most patients a high-benefit low risk intervention. However, factors that influence the confidence to perform exercise training, i.e. exercise self-efficacy (ESE), in CHD patients are virtually unknown. We aimed to identify factors related to low ESE in adults with CHD, and potential strategies for being physically active.

Methods: Seventy-nine adults with CHD; 38 with simple lesions (16 women) and 41 with complex lesions (17 women) with mean age 36.7 ± 14.6 years and 42 matched controls were recruited. All participants completed questionnaires on ESE and quality of life, carried an activity monitor (Actiheart) during four consecutive days and performed muscle endurance tests.

Results: ESE in patients was categorised into low, based on the lowest quartile within controls, (≤ 29 points, n = 34) and high (> 29 points, n = 45). Patients with low ESE were older (42.9 ± 15.1 vs. 32.0 ± 12.4 years, p = 0.001), had more complex lesions (65% vs. 42%, p = 0.05) more often had New York Heart Association functional class III (24% vs. 4%, p = 0.01) and performed fewer shoulder flexions (32.5 ± 15.5 vs. 47.7 ± 25.0, p = 0.001) compared with those with high ESE. In a logistic multivariate model age (OR; 1.06, 95% CI 1.02-1.10), and number of shoulder flexions (OR; 0.96, 95% CI 0.93-0.99) were associated with ESE.

Conclusion: In this study we show that many adults with CHD have low ESE. Age is an important predictor of low ESE and should, therefore, be considered in counselling patients with CHD. In addition, muscle endurance training may improve ESE, and thus enhance the potential for being physically active in this population.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
adult congenital heart disease, exercise self-efficacy, muscle function, physical activity, quality of life
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-144626 (URN)10.1016/j.ijcha.2017.12.002 (DOI)000432566900002 ()29349286 (PubMedID)
Available from: 2018-02-08 Created: 2018-02-08 Last updated: 2018-11-09Bibliographically approved
3. It's like balancing on a slackline: a description of how adults with congenital heart disease describe themselves in relation to physical activity
Open this publication in new window or tab >>It's like balancing on a slackline: a description of how adults with congenital heart disease describe themselves in relation to physical activity
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2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 15-16, p. 3131-3138Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To illuminate how adults with CHD describe themselves in relation to physical activity.

BACKGROUND: Several studies have shown that adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of immense importance to investigate how this population experiences physical activity.

DESIGN: Qualitative study with semi-structured interviews analysed with qualitative content analysis.

METHODS: Semi-structured interviews were individually performed with fourteen adults (women=7, age 19-68 years) with complex CHD. Patients were purposively recruited from the clinic waiting list, based on a scheduled follow-up and diagnosis.

RESULTS: The overall theme, It's like balancing on a slackline, illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four subthemes: (1) Being an adventurer- enjoying the challenges of physical activity; (2) Being a realist- adapting to physical ability; (3) Being a non-doer- lacking prerequisites for physical activity; and (4) Being an outsider- feeling excluded depending on physical ability.

CONCLUSIONS: Adults with CHD seem to have a diverse relationship to physical activity and it involves various aspects throughout the lifespan. The findings point out factors that might constitute as obstacles for being physically active, specific for people with chronic conditions like CHD. This highlights the importance of further exploring the hindering and facilitating factors for being physically active in order to get a deeper understanding of how to support adults with CHD to be physically active.

RELEVANCE TO CLINICAL PRACTICE: Given the diverse relationship to physical activity, nurses have to further investigate the patients' relationship to physical activity, in order to support a healthy lifestyle. Nurses and allied health professionals should offer individualized exercise prescriptions and education about suitable physical activities in relation to physical ability. This article is protected by copyright. All rights reserved.

Keywords
Congenital heart disease, content analysis, interviews, nursing, physical activity, prevention
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-148097 (URN)10.1111/jocn.14507 (DOI)000439796600022 ()29752846 (PubMedID)2-s2.0-85050400287 (Scopus ID)
Available from: 2018-05-28 Created: 2018-05-28 Last updated: 2018-11-09Bibliographically approved
4. Enablers and barriers for being physically active: experiences from adults with congenital heart disease
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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(English)Manuscript (preprint) (Other academic)
National Category
Nursing Cardiac and Cardiovascular Systems
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-153087 (URN)
Available from: 2018-11-06 Created: 2018-11-06 Last updated: 2018-11-13

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Bay, Annika

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