Epidemiology and economic burden of Huntington’s disease: a Canadian provincial public health system perspective

Abstract

Aims

To evaluate the epidemiology, healthcare resource utilization, and direct healthcare costs associated with Huntington’s disease in a Canadian setting with a universal healthcare system.

Materials and methods

Using Albertan administrative health data, a retrospective cohort was identified applying an algorithm requiring two HD diagnostic codes within two years, using the first record as the index date (i.e. proxy for diagnosis date), from 1 April 2010 to 31 March 2019 for patients ≥21 years old. Incidence/prevalence measures were evaluated from 1 April 2010 to 31 March 2019, while healthcare resource utilization and healthcare costs per person-year (inflated to 2020 Canadian dollars) were evaluated from index to the end of follow-up (death, moved out of province, or 31 March 2020).

Results

Mean [standard deviation] age at index (n = 395) was 53.9 [13.8] years and 53.7% were female. From 2010 to 2019, annual HD incidence varied between 0.47 and 1.21/100,000 person-years and HD prevalence increased from 7.25 to 9.33/100,000 persons. The mean number of visits per person-year for general and specialist practitioners was 19.2 [18.8] and 12.2 [25.5], respectively. The mean total all-cause direct healthcare costs were $23,211 [$38,599] per person-year, with hospitalizations accounting for 57.8% of all-cause costs. Costs were higher among individuals with a long-term care stay, a proxy for disease severity.

Limitations and conclusions

This study utilizes administrative health data to describe the epidemiology of HD and utilization of publicly funded care by individuals with HD. While administrative data presents limitations since it is not collected for research purposes, it provides a population-level examination of the burden of HD. There was a substantial economic burden associated with HD in a Canadian setting.

Keywords:

• Huntington’s disease
• epidemiology
• burden of illness
• healthcare resource utilization
• chronic disease
• neurodegenerative diseases

JEL CLASSIFICATION CODES:

• I00
• I
• I12
• I1
• I

Transparency

Declaration of funding

This work was supported by Hoffmann-La Roche Ltd, Mississauga, Ontario, Canada.

Declaration of financial/other relationships

This study is based on data provided by Alberta Health and Alberta Precision Laboratories. The interpretation and conclusions contained herein are those of the researchers and do not necessarily represent the views of the Government of Alberta. Neither the Government of Alberta nor Alberta Health expresses any opinion in relation to this study.

ES, MM, PE, SM, EG, and TC are employed by Medlior Health Outcomes Research Ltd. which received funding for the study from Hoffmann-La Roche Ltd.

JWW, NB, and BM are employed by Hoffmann-La Roche Ltd., who funded this study.

JWW, NB, and BM also hold Hoffmann-La Roche Ltd. stock.

TAM reports speaker honorarium from Abbvie, and International Parkinson and Movement Disorder Society; consultancies from CHDI Foundation/Management, Sunovion, Valeo Pharma, Roche, nQ Medical and Merz; advisory board from Abbvie; Biogen, Sunovion, Medtronic, and research funding from EU Joint Programme—Neurodegenerative Disease Research, uOBMRI, Roche, Ontario Research Fund, CIHR, MJFF, Parkinson Canada, PDF/PSG, LesLois Foundation, PSI Foundation, Parkinson Research Consortium and Brain Canada.

A reviewer on this manuscript has disclosed they have had an educational consultancy for PTC paid to their institution—not on HD. They are also on the advisory boards for Novartis (HD), and received MEGS awards from Sanofi, Akcea and AMGEN for academic work and genetic testing not related to HD. Their centre has received reimbursement for clinical trials from Roche and Prilenia, and research grant funding from the Scottish Government, University of Aberdeen development trust, MRC and HTA. They have attended meetings sponsored by Akcea, MSD, AMGEN, Sanofi, Novartis, Teva and Daiichi Sankyo. The other peer reviewers on this manuscript have no other relevant financial relationships or otherwise to disclose.

Author contributions

ES, MM, PE, SM, EG, TC, JWW, NB, BM, and TAM were involved in the conception and design of the study, the analysis and interpretation of the data, as well as drafting the paper, revising it critically for intellectual content and approving the final version of the paper to be published. All authors agree to be accountable for all aspects of the work.

Acknowledgements

No assistance in the preparation of this article is to be declared.

Previous presentations

A small portion of these results were presented in a poster at the virtual 28th Annual Meeting of the Huntington Study Group (HSG) from 4 to 6 November 2021³³.