Paediatric patients report lower health‐related quality of life in daily clinical practice compared to new normative PedsQL(TM) data

AIM: To compare Health‐Related Quality of Life (HRQOL) of paediatric patients with newly collected HRQOL data of the general Dutch population, explore responses to individual items and investigate variables associated with HRQOL. METHODS: Children (8–12y) and adolescents (13–17y) from the general population (N = 966) and from a paediatric population (N = 1209) completed the Pediatric Quality of Life Inventory (PedsQL(TM)) online via the KLIK Patient‐Reported Outcome Measures portal. PedsQL(TM) scale scores were compared between groups with independent t tests, by age group and gender. Responses to PedsQL(TM) items were explored using descriptive analyses. Linear regression analyses were performed to determine which variables were associated with HRQOL. RESULTS: Paediatric patients reported worse HRQOL than the general population on all PedsQL(TM) scales (p ≤ .001, d = 0.20–1.03), except social functioning, and a high proportion reported problems on PedsQL(TM) items, for example, ‘I have trouble sleeping’. Younger age, female gender and school absence were negatively associated with HRQOL (β = −0.37–0.10, p ≤ .008). CONCLUSION: Paediatric patients reported lower HRQOL than the general population, and school absence, female gender and younger age were associated with lower HRQOL. The results underline the importance to structurally monitor paediatric patients’ HRQOL in clinical practice to detect problems and offer the right help on time.