Background The measurement of quality of life (QoL) has become increasingly important in clinical practice. For children with chronic illnesses, QoL has become 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. The aim of this study was to test whether the KIDSCREEN questionnaire could be used to measure QoL in children born with gastroschisis.
Methods KIDSCREEN is a validated QoL measure developed and normed across 13 European countries as a self-report questionnaire for healthy and chronically ill children and adolescents aged 8 to 18 years. Children born with gastroschisis, identified from the Northern Congenital Abnormality Survey, and their parents completed the questionnaire and the relevance of the questions was discussed with them through cognitive interviewing.
Results Ten children (six females, four males) and ten parents completed the KIDSCREEN questionnaire. Both children and parents found it a good measure of QoL with further explanation needed on only a few items. Children frequently reported finding it a helpful tool in exploring their feelings and that it covered areas pertinent to them. Comments from parents were positive acknowledging that all priority areas were well represented and they felt it was straightforward for their children to complete.
Conclusions This small qualitative study has demonstrated that the KIDSCREEN has adequate face validity as a measure of QoL in these children and is acceptable to both children and their parents.
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