Background The measurement of quality of life (QoL) has become increasingly important in clinical practice. For children with chronic illnesses, QoL is an important dimension of assessment owing to advances in medical care and an increase in survival rates for many conditions. However, there is limited research on QoL in children born with congenital anomalies. Gastroschisis, a congenital anomaly of the abdominal wall, has a good prognosis overall but requires surgical correction and repeated hospitalisation. The aim of this pilot study was: (1) to test whether the KIDSCREEN-52 questionnaire could be used to measure QoL in children born with gastroschisis; and (2) to assess self-reported QoL in these children.
Methods The KIDSCREEN-52 is a validated QoL measure developed and normed across 13 European countries as a self-report questionnaire for healthy and chronically ill children/adolescents (8–18 years) covering ten domains. Children (8–12 years) born with gastroschisis, identified from the Northern Congenital Abnormality Survey, were invited to complete the questionnaire, the relevance of the questions was discussed through cognitive interviewing with the children and their parents, and their QoL scores were compared to age-matched UK norms.
Results Ten children (six females, four males, mean age 9.6 years) and ten parents completed the questionnaire. Children and parents found it a good measure of QoL with further explanation needed on only a few items. Children reported finding it a helpful tool in exploring their feelings and that it covered areas important to them. Parents were positive acknowledging that all priority areas were represented and that it was straightforward for their children to complete.
All ten children described their health as good/very good or excellent. Seven said that they were happy with the way they are, eight were seldom/never worried about the way they looked and eight said they would not like to change anything about their body. In six domains (physical wellbeing; moods and emotions; self-perception; relationships with parents; social support and peers; school environment) children with gastroschisis had similar QoL scores, in three domains (psychological wellbeing; autonomy; social acceptance) their QoL scores were significantly better (p < 0.05) and in one domain (financial resources) significantly lower (p < 0.01) than in the reference group.
Conclusion This study has demonstrated that the KIDSCREEN questionnaire has adequate face validity as a measure of QoL in these children, is acceptable to both children and parents, and suggests that children with gastroschisis have similar, or better, QoL scores than other children.
Acknowledgements This abstract was first presented as a poster at Perinatal Medicine 2014, 9–11 June 2014, Harrogate International Centre, Harrogate, UK, and published as:
Rankin J, Jardine J, Glinianaia SV, Borrill H, McConachie E, Embleton ND. Self-reported quality of life in 8-12 year old children born with gastroschisis: a pilot study. Archives of Disease in Childhood Fetal & Neonatal Ed. 2014;99(Suppl 1):A52.
- quality of life
- congenital anomalies