The impacts of caring for children with inherited metabolic diseases for families: a cross-sectional study
Families caring for children with metabolic diseases experience severe mental health and work impacts, highlighting urgent need for caregiver support programs.
This Canadian cross-sectional study characterizes the substantial burden on families caring for children with inherited metabolic diseases, quantifying mental health impacts (82%), time burden, and work absenteeism, with the greatest burden in children with progressive multi-system involvement. The findings support policy development for caregiver relief programs in the rare metabolic disease space.
What the study was
- Study design
- Cross-sectional cohort sub-study
- Population
- Family caregivers of children ≤12 years with inherited metabolic diseases, Canada
- Sample size
- 71
- Category
- Public Health
- Maturity
- Exploratory
- Journal
- Orphanet Journal of Rare Diseases
Why it surfaced
Rare disease caregiver burden data from a multi-center Canadian cohort. Public health relevance for healthcare policy; underserved population flag appropriate for pediatric IMD families.
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