Household Costs and Other Societal Impacts for Individuals With Duchenne Muscular Dystrophy Stratified by Upper Limb Impairment: Results From a Caregiver Survey
Author(s)
Bryan Innis, MS1, John Jarvis, MBA2, Taylor Renteria, MBA2, Ivana Filipovic Audhya, MS1;
1Sarepta Therapeutics, Inc., Cambridge, MA, USA, 2Medicus Economics, LLC, Milton, MA, USA
1Sarepta Therapeutics, Inc., Cambridge, MA, USA, 2Medicus Economics, LLC, Milton, MA, USA
Presentation Documents
OBJECTIVES: To assess the relationship between upper limb (UL) impairment in Duchenne muscular dystrophy (DMD) and household / societal costs.
METHODS: Caregivers who provided care to a household member with DMD for ≥12 months were surveyed. Information was gathered on DMD-related non-medical costs within the past 5 years and other recurring expenses within the past 3 months (results annualized). UL impairment for individuals with DMD was categorized as: 1) No impairment (full use of UL); 2) Mild impairment (difficulty raising both arms at the same time); or 3) Moderate-to-severe impairment (cannot raise a full glass of water).
RESULTS: Ninety caregivers completed the survey, with 74 (82%) providing care for one individual with DMD and 16 (18%) providing care for ≥2. Caregivers were primarily female (94%) and identified as a primary caregiver (98%). Mean (standard deviation) age for the 106 individuals with DMD was 14.5 (5.3) years, with 40 (38%), 39 (37%), and 27 (25%) having no, mild, or moderate-to-severe UL impairment, respectively. Households incurred high average DMD-related non-medical expenses over the past 5 years regardless of the level of UL impairment (range: $73,057 to $82,669). More progressed UL impairment was associated with higher average medical equipment costs over the past 5 years (none: $7,477; mild: $13,421; moderate-to-severe: $22,180). Annualized costs for professional caregiving increased from $2,504 (none) to $11,199 (moderate-to-severe) with increasing UL impairment. Similarly, the share of caregivers compensated by the government and other entities increased from 7% (2/27) to 52% (13/25) in households with no UL impairment compared to those with moderate-to-severe impairment. The utilization of social benefit programs also increased from 19% (5/27) to 64% (16/25), respectively.
CONCLUSIONS: Households caring for individuals with DMD continue to incur considerable non-medical expenses as UL impairment progresses. Greater UL impairment is associated with increased caregiving costs and societal financial support.
METHODS: Caregivers who provided care to a household member with DMD for ≥12 months were surveyed. Information was gathered on DMD-related non-medical costs within the past 5 years and other recurring expenses within the past 3 months (results annualized). UL impairment for individuals with DMD was categorized as: 1) No impairment (full use of UL); 2) Mild impairment (difficulty raising both arms at the same time); or 3) Moderate-to-severe impairment (cannot raise a full glass of water).
RESULTS: Ninety caregivers completed the survey, with 74 (82%) providing care for one individual with DMD and 16 (18%) providing care for ≥2. Caregivers were primarily female (94%) and identified as a primary caregiver (98%). Mean (standard deviation) age for the 106 individuals with DMD was 14.5 (5.3) years, with 40 (38%), 39 (37%), and 27 (25%) having no, mild, or moderate-to-severe UL impairment, respectively. Households incurred high average DMD-related non-medical expenses over the past 5 years regardless of the level of UL impairment (range: $73,057 to $82,669). More progressed UL impairment was associated with higher average medical equipment costs over the past 5 years (none: $7,477; mild: $13,421; moderate-to-severe: $22,180). Annualized costs for professional caregiving increased from $2,504 (none) to $11,199 (moderate-to-severe) with increasing UL impairment. Similarly, the share of caregivers compensated by the government and other entities increased from 7% (2/27) to 52% (13/25) in households with no UL impairment compared to those with moderate-to-severe impairment. The utilization of social benefit programs also increased from 19% (5/27) to 64% (16/25), respectively.
CONCLUSIONS: Households caring for individuals with DMD continue to incur considerable non-medical expenses as UL impairment progresses. Greater UL impairment is associated with increased caregiving costs and societal financial support.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
EE226
Topic
Economic Evaluation
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies
Disease
SDC: Rare & Orphan Diseases