A real-world evidence study focusing on the burden of Huntington’s disease (HD) in Alberta, was presented at the virtual 28thAnnual Meeting of the Huntington Study Group (HSG) from November 4-6, 2021. This study was conducted by Medlior on behalf of Hoffmann-La Roche. A background on Huntington’s disease can be found here.
Evidence from studies conducted internationally has shown that HD is burdensome for patients, their families, and the healthcare system. However, in Canada, there is limited epidemiological and economic evidence and the burden of HD in Canada is still poorly understood. The objectives of our study were to generate evidence to describe the epidemiological characteristics, estimate the healthcare resource utilization (HRU), and direct costs associated with HD using a retrospective study of administrative health data in Alberta, Canada.
In our real-world evidence study, using data from April 1, 2010 to March 31, 2020, we identified patients ≥21 years of age with HD using a published algorithm. Data from the Practitioner Claims, Discharge Abstract Database (DAD), and National Ambulatory Care Reporting System (NACRS) datasets were used to identify patients with HD. Epidemiologic characteristics, including incidence and prevalence, were described among identified patients with HD. Further, HRU and associated costs outcomes per person-year were evaluated in patients with ≥1 year follow-up.
There were 418 patients with HD identified by the algorithm in Alberta between April 1, 2010 and March 31, 2019. Of these 418 patients, 238 were considered incident cases and 180 were considered prevalent cases. For the burden of illness study evaluating HRU and costs, 395 patients were included, representing those with ≥1 year of follow-up data. Results of our study showed that the annual prevalence of HD increased slightly over time, with a 5-year average annual incidence of 0.83 per 100,000 person-years and a 5-year period prevalence of 12.15 per 100,000 person-years. For HRU outcomes, most HRU resulted from general and specialist practitioner visits. The mean [standard deviation; (SD)] total all cause direct healthcare costs were $23,211 [38,599] per person-year and hospitalizations represented the largest cost driver.
The results of this study provide an understanding of the epidemiology and substantial burden of HD in a Canadian setting, as well as how individuals with HD and care partners are utilizing publicly funded care. The sizable number of physician visits and high cost of hospitalizations illustrates the need for continued research and development to advance the care available to patients diagnosed with HD in Canada.