‘Whose quality of life is it anyway?’ – Evaluation of quality of life tools for children with complex needs accessing specialist leisure provision

Studies of quality of life (QoL) routinely exclude children with complex needs. These children struggle to access leisure activities, particularly those with severe communication needs or challenging behaviour. Sparkle provides specialised leisure services to children and young people (0-17 years) with complex needs in South Wales, UK. We aimed to evaluate previously validated tools to measure QoL with this population. Three tools were assessed over a 6-year period – PedsQL, KINDL R and QI-Disability. PedsQL (41) and KINDL R (10) were attempted by the children attending the clubs (5-17 years old), and QI-Disability by caregivers (96). The majority of child participants had a neurodevelopmental diagnosis, a proportion of whom were non-verbal. Neither KINDL R nor PedsQL were appropriate for the population, with children unable to understand the questions and answers. The QI-Disability scores showed a statistically significant improvement in parents’ estimate of their child’s positive emotions, but results were severely limited by drop off. Existing validated QoL tools cannot be meaningfully used by children with complex needs. While the caregiver tool showed some benefit of specialist leisure provision, it is recognised that caregivers may perceive a child’s QoL differently to the child themselves, and caregivers clearly found repeat measurements onerous.