Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Quality of life in asymptomatic children and adolescents before and after diagnosis of hypertrophic cardiomyopathy through family screening.
, Department of Paediatric Cardiology, The Queen Silvia Children’s Hospital.
The Queen Silvia Children’s Hospital, Department of Paediatric Cardiology, Gothenburg.
University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy.
University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy,.
2013 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 22, no 1-2, 211-221 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objectives.  The aim of this study was to measure quality of life (QoL) in asymptomatic children with hypertrophic cardiomyopathy (HCM) before and after diagnosis. Background.  Hypertrophic cardiomyopathy is a disease with a 50% risk of inheritance. Children at risk for serious complications can be diagnosed early with family screening, but before embarking on a screening programme, it is important to evaluate the psychosocial consequences of such screening. Design.  Prospective case-control study. Methods.  Quality of life was measured using a questionnaire by Lindström incorporating both objective and subjective aspects of the three spheres: external, interpersonal and personal, before and two years after diagnosis. The study group consisted of 13 children/adolescents (11 boys), median age 11 (5-18) years, with HCM diagnosed at family screening. All filled out a questionnaire before diagnosis and at follow-up. 41 healthy children/adolescents (22 boys), median age 11 (2-19) years with a first-degree relative diagnosed with HCM served as controls; 15/41 also completed follow-up data. Results.  The total QoL score for all spheres was similar in both groups at baseline and follow-up. In the interpersonal sphere, it was more common that children diagnosed with HCM had no siblings both at baseline (p = 0·002) and follow-up (p = 0·005). The family situation, social support and life events were unchanged from baseline to follow-up. Children with HCM had significantly more psychosomatic symptoms compared with controls at baseline (p < 0·05) but not at follow-up. Self-esteem, peer acceptance and satisfaction with school were unchanged and similar between groups. Conclusion.  Family screening for HCM does not appear to negatively influence QoL. Relevance to clinical practice.  This study indicates that family screening of asymptomatic children and adolescents had no significant detrimental effects on QoL. This suggests that the benefits of finding symptomatic individuals at risk for serious complications outweigh concerns about screening asymptomatic individuals.

Place, publisher, year, edition, pages
2013. Vol. 22, no 1-2, 211-221 p.
Keyword [en]
adolescence, cardiovascular, children, quality of life, screening
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hv:diva-4366DOI: 10.1111/j.1365-2702.2012.04108.xISI: 000312444500022PubMedID: 22672565OAI: oai:DiVA.org:hv-4366DiVA: diva2:533039
Available from: 2012-06-12 Created: 2012-06-12 Last updated: 2014-10-23Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed
In the same journal
Journal of Clinical Nursing
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

Altmetric score

Total: 84 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf