Disability weight and estimated disability-adjusted life years of patients with X-linked dystonia-parkinsonism.

No baseline disability weights (DW) or disability-adjusted life years (DALY) have been established for X-linked dystonia-parkinsonism (XDP). This study aimed to calculate the DW and estimate the DALY for XDP using the Health Utility Index-3 (HUI-3). A cross-sectional study was conducted with 96 genetically confirmed male patients with XDP from movement disorder clinics in the Philippines. HUI-3 was used to measure 8 health attributes. DW were derived by subtracting utility scores from 1 and analyzed against variables using various statistical tests. DALY, years lived with disability, and years of life lost were estimated using a pragmatic framework based on the XDP census and Global Burden of Disease 2010 life expectancy. The mean age of patients was 45.57 ± 8.26 years. The mean DW was 0.48 ± 0.31, with a median of 0.40. Because DW is derived directly from HUI-3 attribute scores, multivariable regression was used to decompose HUI-3 attributes into the relative contributions of each attribute, with ambulation (β = 0.109), and emotion (β = 0.097) being the strongest contributors. Current or prior employment was a significant predictor of DW (β = 0.172, p = 0.021). Based on registry data, the estimated total disability-adjusted life years for XDP in the Philippines was 9718.84, representing a rate of 10.53 per 100,000 population. The disease burden was 40.2% years lived with disability, and 59.8% years of life lost. XDP imposes a substantial disease burden through both chronic disability and premature mortality. These findings provide a conservative baseline for quantifying the impact of XDP to inform public health policy in the Philippines.