WORK PRODUCTIVITY AND ACTIVITY IMPAIRMENT IN HUNTINGTON'S DISEASE: EVIDENCE FROM THE UK
Author(s)
Edward J. Wild, PhD FRCP1, Idaira Rodriguez Santana, PhD2, Claudia Mighiu, MSc2, Ali Toumadj, PharmD3, Ioannis Tomazos, MBA, PhD3.
1UCL Huntington's Disease Centre, London, United Kingdom, 2Prime HCD, Knutsford, United Kingdom, 3uniQure, Inc., Lexington, MA, USA.
1UCL Huntington's Disease Centre, London, United Kingdom, 2Prime HCD, Knutsford, United Kingdom, 3uniQure, Inc., Lexington, MA, USA.
OBJECTIVES: Huntington’s disease (HD) is a rare neurodegenerative condition with motor, cognitive, and psychiatric manifestations, impacting daily activities and work productivity from early stages. Our objective was to assess the impact of HD on work productivity and activity impairment in diagnosed and pre-diagnosed HD individuals, using the Work Productivity and Activity Impairment (WPAI) tool, in the UK.
METHODS: Two studies characterized the burden of illness (BOI) before and after formal HD motor diagnosis: (i) HDBOI, including individuals with diagnosed HD, classified as early (ES), mid (MS), or advanced (AS) based on physician assessment; and (ii) Pre-HDBOI - including pre-manifest gene expansion carriers (“pre-manifest”) and genetically untested individuals at risk of HD (“at‑risk”). WPAI was used to assess work time missed, impaired productivity, overall work productivity impairment (WPI), and activity impairment, reported as percentages (0-100, higher indicates greater impairment). Data were analyzed descriptively.
RESULTS: The post-motor-diagnosis HD sample (n=56) had a mean age of 51.5 years and was predominantly male (64.3%), with most in MS (46.4%) or AS stages (42.8%). Over half were not employed (53.6%). Among employed individuals (46.4%), WPI was 60.8%, increasing from 43.7% (ES) to 65.1% (AS). Activity impairment ranged from 51.7% (ES) to 67.1% (AS).
The pre-motor-diagnosis HD sample (n=26) had a mean age of 35.6 years; 92.3% were female, with 53.8% “pre-manifest” and the remainder “at‑risk”. Most individuals were employed (80.8%).
WPI was 25.1% (“pre-manifest”) and 10.3% (“at risk”), while impairment in daily activities was 37.9% and 11.7%, respectively.
CONCLUSIONS: These findings provide evidence of the societal burden of HD in the UK, demonstrating a substantial impact on work and daily activities even prior to diagnosis, which increases with disease severity, alongside a significant decline in employment from pre-motor diagnosis to diagnosis. Our findings may underestimate the true burden due to impaired awareness in people with HD, warranting further research.
METHODS: Two studies characterized the burden of illness (BOI) before and after formal HD motor diagnosis: (i) HDBOI, including individuals with diagnosed HD, classified as early (ES), mid (MS), or advanced (AS) based on physician assessment; and (ii) Pre-HDBOI - including pre-manifest gene expansion carriers (“pre-manifest”) and genetically untested individuals at risk of HD (“at‑risk”). WPAI was used to assess work time missed, impaired productivity, overall work productivity impairment (WPI), and activity impairment, reported as percentages (0-100, higher indicates greater impairment). Data were analyzed descriptively.
RESULTS: The post-motor-diagnosis HD sample (n=56) had a mean age of 51.5 years and was predominantly male (64.3%), with most in MS (46.4%) or AS stages (42.8%). Over half were not employed (53.6%). Among employed individuals (46.4%), WPI was 60.8%, increasing from 43.7% (ES) to 65.1% (AS). Activity impairment ranged from 51.7% (ES) to 67.1% (AS).
The pre-motor-diagnosis HD sample (n=26) had a mean age of 35.6 years; 92.3% were female, with 53.8% “pre-manifest” and the remainder “at‑risk”. Most individuals were employed (80.8%).
WPI was 25.1% (“pre-manifest”) and 10.3% (“at risk”), while impairment in daily activities was 37.9% and 11.7%, respectively.
CONCLUSIONS: These findings provide evidence of the societal burden of HD in the UK, demonstrating a substantial impact on work and daily activities even prior to diagnosis, which increases with disease severity, alongside a significant decline in employment from pre-motor diagnosis to diagnosis. Our findings may underestimate the true burden due to impaired awareness in people with HD, warranting further research.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
RWD141
Topic
Patient-Centered Research, Real World Data & Information Systems
Disease
Neurological Disorders, Rare & Orphan Diseases