The Societal Burden associated with Adolescent Idiopathic Scoliosis: a cross-sectional burden-of-disease study

Abstract Background Adolescent idiopathic scoliosis (AIS) has a general population prevalence of 2–3%. The impact of AIS on the patients’ quality of life is increasingly recognized. However, there is limited knowledge on the societal burden of AIS. Therefore, this study aimed to determine societal burden of AIS. Methods A cross-sectional, prevalence-based, bottom-up burden of disease study was conducted. AIS patients or parents of a child with AIS residing in the Netherlands were eligible for inclusion. The survey was distributed between June - December 2022 and was completed once by each participant. The institute for Medical Technology Assessment - Medical Consumption and Productivity Cost Questionnaires were used to assess costs. The health-related quality of life (HRQoL) was assessed using the EuroQol 5D-5L/EuroQol 5D Youth and the Scoliosis Research Society-22 revised questionnaires. Costs and HRQoL were identified, measured, and valued. Results Participants (n = 229) were predominantly female (92%), on average 35 years old, and were employed (65%). The societal cost for a patient with AIS in the Netherlands was €12,275 per year. The largest costs were estimated for the healthcare and productivity sectors. The mean utility score for adults was 0.7 (SD 0.20). Severe pain was experienced by 10% of the adult participants and 44% reported to experience moderate pain/discomfort. Statistically significant differences between different age groups were present for individual sector costs and HRQoL. Conclusions AIS negatively impacts societal costs and the HRQoL. Reducing the productivity sector burden and further improving the HRQoL of life for patients with AIS is needed.