Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies

Abstract

Introduction/Aims: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. Methods: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011-2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. Results: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. Discussion: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation.

Assessing the value of delandistrogene moxeparvovec (SRP-9001) gene therapy in patients with Duchenne muscular dystrophy in the United States

“…A societal perspective that includes potential consequences extending beyond the healthcare system, such as productivity, scientific spillover, or caregiver impact, would be informative in understanding the full value of a treatment. For example, the potential impact delaying DMD progression has on increased working years and presenteeism for caregivers [ 97 , 100 ], or the increased aspirations and opportunities for patients with DMD to work [ 101 ] were not considered. Similarly high vector processing and manufacturing costs associated with GTs [ 82 , 83 ] are not included in this value assessment.…”

Healthcare Stakeholder Perspectives on a Value Assessment Approach for Duchenne Muscular Dystrophy Therapies

“…Caregivers often have to reduce their working hours or stop work completely to care for an individual with Duchenne. Reductions in predicted annual earnings for female caregivers of individuals with Duchenne with 0-3 y and ≥4 y of ambulation loss have been estimated at $13,828 and $23,995 (2020 USD), respectively [28]. Data on family spillovers is limited, as they are not often captured in claims data and existing databases.…”

The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study

“…Due to the lack of public funds, there is a decrease in the income of patients and their families [12][13][14]. It is estimated that they spend a large part of their income on medicines, travel, home adaptations, complementary therapies and unique food products [15].…”