The economic and societal burden associated with adolescent idiopathic scoliosis: A burden-of-disease study protocol.

Background: Adolescent idiopathic scoliosis (AIS) has an estimated general population prevalence of 2% to 3%. The impact of adolescent idiopathic scoliosis (AIS) on the patients' experienced quality of life and psychological well-being and the resulting societal burden are increasingly recognized. However, there is limited knowledge on the economic burden of AIS. This cross-sectional, prevalence-based, bottom-up approach burden of disease study aims to determine the impact associated with adolescent idiopathic scoliosis in terms of the cost-of-illness and health-related quality of life from a societal perspective in the Netherlands.

Methods: Persons diagnosed with AIS or parents of a child with AIS that are willing and able to answer the questionnaires will be eligible to participate. Patients will be included consecutively between June until January 2023. Costs and self-perceived health-related quality of life will be estimated using 3 steps: identification, measurement and valuation. To assess the costs associated with AIS the institute for Medical Technology Assessment - Medical Consumption Questionnaire and the institute for Medical Technology Assessment - Productivity Cost Questionnaire will be used. To assess the HRQoL of adult AIS patients the EuroQol 5-dimensions or EuroQol 5-dimensions Youth questionnaire for children under the age of 12 and the Scoliosis Research Society-22 revised questionnaire will be considered.

Discussion: This is the first study in this field. It will help raise awareness for AIS and wider support for both the patient community and informal care takers among healthcare professionals and policymakers. Major strengths of this study will be the use of mostly validated, standardized questionnaires. Limitations include the cross-sectional and retrospective nature of the study design.