Caregivers' Experiences & Economic Impact Study

Theme: Family Impact, Health Economics, Psychosocial Wellbeing

This global mixed-methods study explores the direct, indirect, and psychosocial costs of caring for a child with AMC — an often overlooked but critical aspect of rare disease management.

The project includes:
• A validated caregiver cost questionnaire, developed by experts in rehabilitation, social work, health economics, and lived experience.

 • An international quantitative survey to understand the direct, indirect and psychosocial costs for caregivers of children with AMC, available in English, French, and Spanish.
• Standardized measures of caregiver wellbeing (EQ-5D-3L, SF-12) and child health-related quality of life (EQ-5D-Y).
• In-depth qualitative interviews with caregivers of children with AMC to capture their lived experiences.

Outcomes measure:
• Direct (out-of-pocket expenses) and indirect (medical, travel, lost work time) costs.
• Psychosocial strain.
• Factors predicting higher cost or distress (child’s age, surgical history, joint involvement, caregiver characteristics).

This study will inform policymaking, resource allocation, and the development of supports to reduce caregiver strain and improve family quality of life.

Funding:

• CRIR Doctoral Studentship awarded to Rose Elekanachi (2023-2024)

• Graduate Student Award and Graduate Excellence Fellowship, McGill University awarded to Rose Elekanachi (2023, 2022, 2021, 2020)