Responsiveness and minimal clinically important difference of TNO-AZL Preschool Children Quality of Life in children with cerebral palsy

Purpose To examine the responsiveness and minimal clinically important difference (MCID) of the TNO-AZL (Netherlands Organization for Applied Scientific Research Academic Medical Centre) Preschool Children Quality of Life (TAPQOL) in children with cerebral palsy (CP). Methods Ninety-seven children with CP (60 males, 37 females; aged 1–6 years) and their caregivers were recruited from the rehabilitation programs of Chang Gung Memorial Hospital in Taiwan for this 6-month longitudinal follow-up study. The Functional Independence Measure for Children (WeeFIM) and TAPQOL outcomes were measured at baseline and at a 6-month follow-up. Responsiveness was examined using the standardized response mean (SRM). The distribution-based and anchor-based MCID were determined. The TAPQOL outcomes include physical functioning (PF), social functioning (SF), cognitive functioning (CF), and emotional functioning (EF) domains. Results The responsiveness of the TAPQOL for all of TAPQOL domains was marked (SRM = 1.12–1.54). The anchor-based MCIDs of TAPQOL for PF, SF, CF, EF, and total domains were 1.25, 3.28, 2.93, 2.25, and 1.73, respectively, which were similar to the distribution-based MCID values of TAPQOL, except in the PF domain. The distribution-based MCIDs of TAPQOL in various domains were 2.85–3.73 when effect size (ES) was 0.2, 7.13–9.32 when ES was 0.5, and 11.40–14.91 when ES was 0.8. Conclusions TAPQOL is markedly responsive to detect change in children with CP. The caregivers perceived the minimally important change in HRQOL of their children at a relatively low treatment efficacy. Researchers and clinicians can utilize TAPQOL data to determine whether changes in TAPQOL scores indicate clinically meaningful effects post-treatment and at the follow-up.