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Self-reported health experiences of children living with congenital heart defects: Including patient-reported outcomes in a national cohort study

Self-reported health experiences of children living with congenital heart defects: Including patient-reported outcomes in a national cohort study

Knowles, Rachel Louise ORCID: 0000-0002-5490-7682, Tadic, Valerija ORCID: 0000-0003-3982-0340, Hogan, Ailbhe, Bull, Catherine, Rahi, Jugnoo Sangeeta and Dezateux, Carol (2016) Self-reported health experiences of children living with congenital heart defects: Including patient-reported outcomes in a national cohort study. PLOS ONE, 11 (8):e0159326. ISSN 1932-6203 (doi:https://doi.org/10.1371/journal.pone.0159326)

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Abstract

Background:
Understanding children’s views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs.

Methods:
In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a ‘heart problem’. We compared the characteristics of children with more and less severe cardiac diagnoses and, through collaborative inductive content analysis, investigated the subjective experiences and coping strategies described by children in both clinical severity groups.

Results:
Text and/or drawings were returned by 436 children (246 boys [56%], mean age 12.1 years [SD 1.0; range 10–14]); 313 had less severe (LS) and 123 more severe (MS) cardiac diagnoses. At the most recent hospital visit, a higher proportion of the MS group were underweight (more than two standard deviations below the mean for age) or cyanosed (underweight: MS 20.0%, LS 9.9%; cyanosed: MS 26.2%, LS 3.5%). Children in the MS group described concerns about social isolation and feeling ‘different’, whereas children with less severe diagnoses often characterised their CHD as ‘not a big thing’. Some coping strategies were common to both severity groups, including managing health information to avoid social exclusion, however only children in the LS group considered their CHD ‘in the past’ or experienced a sense of survivorship.

Conclusions:
Children’s reported experiences were not dependent on their cardiac diagnosis, although there were clear qualitative differences by clinical severity group. Children’s concerns emphasised social participation and our findings imply a need to shift the clinical focus from monitoring cardiac function to optimising participation. We highlight the potential for informing and evaluating clinical practice and service provision through seeking patient-reported outcomes in paediatric care.

Item Type: Article
Additional Information: Copyright: © 2016 Knowles et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Uncontrolled Keywords: Congenital Heart Defects; self-report; qualitative research; patient-reported outcome; child
Subjects: R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Faculty / Department / Research Group: Faculty of Education & Health
Faculty of Education & Health > Applied Psychology Research Group
Faculty of Education & Health > Department of Psychology, Social Work & Counselling
Last Modified: 16 May 2019 10:31
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: GREAT 2
URI: http://gala.gre.ac.uk/id/eprint/23297

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