title: Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study.
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.
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population Policy and Practice Programme, UCL Institute of Child Health, University College London, London, United Kingdom.
authors.forename: Rachel Louise
authors.identifier: http://orcid.org/0000-0002-5490-7682
authors.initials: RL
authors.lastname: Knowles
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population Policy and Practice Programme, UCL Institute of Child Health, University College London, London, United Kingdom.
authors.forename: Valerija
authors.initials: V
authors.lastname: Tadic
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population Policy and Practice Programme, UCL Institute of Child Health, University College London, London, United Kingdom.
authors.forename: Ailbhe
authors.initials: A
authors.lastname: Hogan
authors.affiliation: Cardiac Unit, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom.
authors.forename: Catherine
authors.initials: C
authors.lastname: Bull
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population Policy and Practice Programme, UCL Institute of Child Health, University College London, London, United Kingdom.
authors.forename: Jugnoo Sangeeta
authors.initials: JS
authors.lastname: Rahi
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population Policy and Practice Programme, UCL Institute of Child Health, University College London, London, United Kingdom.
authors.forename: Carol
authors.initials: C
authors.lastname: Dezateux
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D008297:Male; D010358:Patient Participation / Q000523:psychology*; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D057566:Self Report