Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study

Abstract

BackgroundUnderstanding 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.MethodsIn 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.ResultsText 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.ConclusionsChildren’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.

Being parent of a child with congenital heart disease, what does it mean? A qualitative research

“…The results of a study showed that parents of children of over 2 years and older have difficulty managing child behavior in terms of the physician-defined limitations and attracting child’s cooperation [ 23 ]. Their children also hate social exclusion because of their sense of belonging to their peers [ 24 ].…”

Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

“…Children's and their families' daily lives are significantly affected by a chronic disease, because it introduces new expectations and limitations that need to be addressed on a daily basis (Marshall, Carter, Rose, & Brotherton, 2009). The interest in health care for young persons with chronic diseases has shifted from medical outcomes such as survival to a greater emphasis on wellbeing, daily life experiences, health status and psychosocial outcomes as an essential construct for capturing health outcomes in children and adolescents (Bratt, Luyckx, Goossens, Budts, & Moons, 2015;Emmanouilidou, Galli-Tsinopoulou, Karavatos, & Nousia-Arvanitakis, 2008;Klatchoian et al, 2008;Knowles et al, 2016).…”

“…Caring for a child with CHD is a stressful experience for families with an impact on family life at various levels because of the increased burden and responsibilities imposed on these families (Almesned, Al-Akhfash, & Al Mesned, 2013; Wei, Roscigno, Hanson, & Swanson, 2015; Wray et al, 2018; Wray & Maynard, 2006). The majority of previous studies addressing psychosocial aspects and impact of CHD on the daily life of children and family have been conducted in Western countries (Cornett & Simms, 2014; Knowles et al, 2016; Rassart, Luyckx, Goossens, Apers, & Moons, 2014; Shearer, Rempel, Norris, & Magill-Evans, 2013; Sira, Desai, Sullivan, & Hannon, 2014). However, it is important to emphasize that the sociocultural/political context, family dynamics, religion, and health care systems vary across societies, and it is likely that these factors have an impact on well-being and psychosocial issues.…”

Patient-reported outcome measures in congenital heart surgery: a systematic review

“…Of the six selected studies, the distribution per age was as follows: three utilised patient-reported outcome measures in the adult CHD population, 4,7,8 one was conducted in adolescents and young adults with CHD, 5 one was conducted by parents who were told to report from the child's perspective, 3 one was conducted by children between the ages of 10 and 14, in addition to their parents answering the questionnaire. 6…”