F07 Demographic characteristics and health resource use of the european participants from the huntington’s disease burden of illness study (HDBOI)

Background Huntington’s Disease (HD) is a rare, inherited, and complex neuro-degenerative disorder, affecting cognition, movement, and mood. There is a lack of up-to-date real-world evidence documenting the overall burden of HD by disease stage and from a multinational perspective. This study provides an overview of demographic characteristics and HD-related health resource use (HRU) of European participants of the HDBOI study. Methods The HDBOI is a retrospective, cross-sectional dataset that captures sociodemographic, clinical variables and HRU of a cohort of HD patients which is reported by the treating physician. Patients and caregivers reported information on health-related quality of life, non-medical and indirect costs associated with HD by means of two optional questionnaires. European countries included in the study were Germany, Spain, Italy, France and UK. Statistical significance of differences by disease stage were assessed by ANOVA tests. Results The HDBOI European sample was comprised of 1,602 HD patients, of which 40% were early stage (ES), 34% mid stage (MS) and 26% advanced stage (AS). Approximately 59% of the patients were male and the mean age was 47.5 years (SD± 13.7). A total of 445 patients and 465 caregivers completed their optional questionnaires. Regarding HRU, the average number of annual visits to the treating physician increased with disease severity (p Conclusion The HDBOI study provides novel data to quantify HD health resource use by disease stage, increasing the evidence base for the HD community.