Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2018

Open Access 01-12-2018 | Research

Health condition and familial factors associated with health-related quality of life in adolescents with congenital heart disease: a cross sectional study

Authors: Yu-Mi Im, Tae-Jin Yun, Sunhee Lee

Published in: Health and Quality of Life Outcomes | Issue 1/2018

Login to get access

Abstract

Background

The focus of clinical care after the repair of congenital heart disease has shifted from saving life of the patient to the patient’s quality of life. The purpose of this study was to examine the health condition and familial factors associated with the health related quality of life of adolescents with congenital heart disease.

Methods

Ninety-eight adolescents aged 13–19 years were collected from a congenital heart clinic from July 22 to August 23, 2013. Perceptions of parental rearing behaviors, health related quality of life of adolescent with congenital heart disease, and general characteristics were measured. We used multiple linear regression analysis to explore factors that are associated with the health related quality of life of adolescents with congenital heart disease.

Results

New York heart association class (Adj R2 = .186, p = .000), presence of siblings (Adj R2 = .240, p = .010), and mother’s emotional warmth (Adj R2 = .265, p = .043) were significantly associated with the health related quality of life of adolescents with congenital heart disease.

Conclusions

Emotionally warm parental rearing behaviors and the presence of siblings were important familial factors that were positively associated with HRQOL in adolescents with CHD. Therefore, it is important for healthcare providers to develop a greater sensitivity to, and awareness of, the familial influences that may be impacting a subject’s HRQOL, as well as the exigencies of the CHD, itself.
Literature
1.
Wray J, Brown K, Franklin R, Cassedy A, Marino BS. Assessing the generalisability of the pediatric cardiac quality of life inventory in the United Kingdom. Cardiol Young. 2014;24(2):220–8.CrossRefPubMed
2.
Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation. 2010;122(22):2264–72.CrossRefPubMed
3.
Park JH, Park SW, Lee JY, Lee SW, Shin YH, Lee SH. Survival rates of patients with congenital heart disease. Korean Soc Matern Child Health Conf. 2003;2:81–2.
4.
Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, et al. Quality of life of adults with congenital heart disease in 15 countries: evaluating country-specific characteristics. J Am Coll Cardiol. 2016;67:2237–45.CrossRefPubMed
5.
Bratt EL, Luyckx K, Goossens E, Budts W, Moons P. Patient-reported health in young people with congenital heart disease transitioning to adulthood. J Adolesc Health. 2015;57(6):658–65.CrossRefPubMed
6.
Bertoletti J, Marx GC, Hattge SP, Pellanda LC. Health-related quality of life in adolescents with congenital heart disease. Cardiol Young. 2015;25(3):526–32.CrossRefPubMed
7.
Chiang YT, Chen CW, Su WJ, Wang JK, Lu CW, Li YF, et al. Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease. J Adv Nurs. 2015;71(3):599–608.CrossRefPubMed
8.
Fteropoulli T, Stygall J, Cullen S, Deanfield J, Newman SP. Quality of life of adult congenital heart disease patients: a systematic review of the literature. Cardiol Young. 2013;23:473–85.CrossRefPubMed
9.
10.
Eiser C, Morse R. The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr. 2001;22(4):248–56.CrossRefPubMed
11.
Naughton MJ, Shumaker SA. The case for domains of function in quality of life assessment. Qual Life Res. 2003;12(Suppl 1):73–80.CrossRefPubMed
12.
Schenker R, Parush S, Rosenbaum P, Rigbi A, Yochman A. Is a family-centred initiative a family-centered service? A case of a conductive education setting for children with cerebral palsy. Child Care Health Dev. 2016;42(6):909–17.CrossRefPubMed
13.
Faul F, Erdfelder E, Lang AG, Buchner A. G*power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods. 2007;39:175–91.CrossRefPubMed
14.
Petrowski K, Berth H, Schmidt S, Schumacher J, Hinz A, Brahler E. The assessment of recalled parental rearing behavior and its relationship to life satisfaction and interpersonal problems: a general population study. BMC Med Res Methodol. 2009;9:17.CrossRefPubMedPubMedCentral
15.
Marino BS, Shera D, Wernovsky G, Tomlinson RS, Aguirre A, Gallagher M, et al. The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res. 2008;17(4):613–26.CrossRefPubMed
16.
Marino BS, Drotar D, Cassedy A, Davis R, Tomlinson RS, Mellion K, et al. External validity of the pediatric cardiac quality of life inventory. Qual Life Res. 2011;20(2):205–14.CrossRefPubMed
17.
Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JI, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001;37:1170–5.CrossRefPubMed
18.
O’Connor AM, Wray J, Tomlinson RS, Cassedy A, Jacobs JP, Jenkins KJ, et al. Impact of surgical complexity on health-related quality of life in congenital heart diseas surgical survivors. J Am Heart Assoc. 2016;5(7):e001234.CrossRefPubMedPubMedCentral
19.
Rassart J, Luyckx K, Goossens E, Apers S, Moons P. i-DETACH investigators. A closer look at the developmental interplay between parenting and perceived health in adolescents with congenital heart disease. J Behav Med. 2014;37(6):1202–14.CrossRefPubMed
20.
Masten S, Tellegen A. Resilience in developmental psychopathology: contributions of the project competence longitudinal study. Dev Psychopathol. 2012;24(2):345–61.CrossRefPubMed
21.
Ahn JA, Lee S. Peer attachment, perceived parenting style, self-concept, and school adjustments in adolescents with chronic illness. Asian Nurs Res. 2016;10(4):300–4.CrossRef
22.
Jelenova D, Prasko J, Ociskova M, Latalova K, Karaskova E, Hruby R, et al. Quality of life and parental styles assessed by adolescents suffering from inflammatory bowel diseases and their parents. Neuropsychiatr Dis Treat. 2016;12:665–72.PubMedPubMedCentral
23.
Serkel-Schrama IJP, de Vries J, Nieuwesteeg AM, Pouwer F, Nyklíček I, Speight J, et al. The association of mindful parenting with glycemic control and quality of life in adolesents with type 1 diabetes: results from diabetes MILES-the Netherlands. Mindfulness. 2016;7:1227–37.CrossRefPubMedPubMedCentral
24.
Sanders A, Szymanski K, Fiori K. The family roles of siblings of people diagnosed with a mental disorder: heroes and lost children. Int J Psychol. 2014;49(4):257–62.CrossRefPubMed
25.
Carter S, Cook J, Sutton-Boulton G, Ward V, Clarke S. Social pedagogy as a model to provide support for siblings of children with intellectual disabilities: a report of the views of the children and young people using a sibling support group. J Intellect Disabil. 2016;20(1):65–81.CrossRefPubMed
26.
Mota CP, Matos PM. Does sibling relationship matter to self-consept and resilience in adolescents under residential care? Child Youth Serv Rev. 2015;56:97–106.CrossRef
27.
Garcia Guerra G, Robertson CM, Alton GY, Joffe AR, Dinu IA, Nicholas D, et al. Quality of life 4 years after complex heart surgery in infancy. J Thorac Cardiovasc Surg. 2013;145(2):482–8.CrossRefPubMed
28.
Lee S, Lee J, Choi JY. The effect of a resilience improvement program for adolescents with complex congenital heart disease. Eur J Cardiovasc Nurs. 2017;16(4):290–8.CrossRefPubMed
29.
Schoormans D, Sprangers MAG, Budts W, Mulder BJ, Apers S, Moons P. Perceived health is partially associated with the symptomatological profile in patients with benign and severe conditions: the case of congenital heart disease. Qual Life Res. 2013;2:1295–304.CrossRef
30.
Bang JS, Jo S, Kim GB, Kwon BS, Bae EJ, Noh CI, et al. The mental health and quality of life of adult patients with congenital heart diease. Int J Cardiol. 2013;179:49–53.CrossRef
31.
Schoormans D, Mulder BJM, van Melle JP, Pieper PG, van Dijk AP, Sieswerda GT, et al. Illness perception of adults with congenital heart disease and their predictive value for quality of life two year later. Eur J Cardiovasc Nurs. 2014;13(1):86–94.CrossRefPubMed
32.
Eslami B, Macassa G, Sundin Ö, Khankeh HR, Soares JJ. Quality of life and life satisfaction among adults with without congenital heart disease in a developing country. Eur J Prev Cardiol. 2015;22(2):169–79.CrossRefPubMed
Metadata
Title
Health condition and familial factors associated with health-related quality of life in adolescents with congenital heart disease: a cross sectional study
Authors
Yu-Mi Im
Tae-Jin Yun
Sunhee Lee
Publication date
01-12-2018
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2018
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-018-0841-y

Other articles of this Issue 1/2018

Health and Quality of Life Outcomes 1/2018 Go to the issue

Study protocol

A prospective observational study to assess clinical decision-making, prognosis, quality of life and satisfaction with care in patients with relapsed/refractory multiple myeloma: the CLARITY study protocol

Research

Prevalence of generalized anxiety disorder and its related factors among infertile patients in Iran: a cross-sectional study

Review

Effect of psychosocial interventions on the quality of life of patients with colorectal cancer: a systematic review and meta-analysis

Research

How patient participation was used to develop a questionnaire that is fit for purpose for assessing quality of life in severe asthma

Research

Obstetric brachial plexus injuries (OBPIs): health-related quality of life in affected adults and parents

Research

Health related quality of life in patients with community-acquired pneumococcal pneumonia in France