Counting the Cost: The Hidden Financial Realities of Neuromuscular Disease Through Patient and Family Perspectives
This study was designed and conducted in partnership with individuals living with NMDs and caregivers. Three trained patient and family research partners contributed to the development of the focus group guide and interpretation of results. All participants contributed their lived experiences to inform and validate key findings. Their input was central to the design, analysis and preparation of this manuscript, ensuring alignment with community priorities.
Authors
- Stacey Lintern
- Homira Osman (ORCID: https://orcid.org/0009-0001-4225-9075)
- Jodi Warman‐Chardon (ORCID: https://orcid.org/0000-0002-0187-2199)
- Kathryn A. Selby (ORCID: https://orcid.org/0000-0001-9239-1704)
- Lawrence Korngut (ORCID: https://orcid.org/0000-0003-1594-5923)
- Lola Lessard (ORCID: https://orcid.org/0000-0002-3141-0227)
- Gerald Pfeffer (ORCID: https://orcid.org/0000-0002-7657-7098)
- Cynthia Gagnon (ORCID: https://orcid.org/0000-0003-2829-8470)
- Hanns Lochmüller (ORCID: https://orcid.org/0000-0003-2324-8001)
- Kednapa Thavorn (ORCID: https://orcid.org/0000-0003-4738-8447)
- Alyssa Grant (ORCID: https://orcid.org/0000-0003-3374-5212)
- Hugh J. McMillan (ORCID: https://orcid.org/0000-0001-8927-2018)
- Ian C. P. Smith (ORCID: https://orcid.org/0000-0001-5269-1710)
- Zainab Adamji (ORCID: https://orcid.org/0009-0002-9728-3790)
Institutions
- Allen Institute for Brain Science (US)
- Université de Sherbrooke (CA)
- University of Ottawa (CA)
- Children's Hospital of Eastern Ontario (CA)
- Muscular Dystrophy Canada (CA)
- Ottawa Hospital (CA)
- Alberta Children's Hospital (CA)
- BC Children's Hospital (CA)
- Ontario Brain Institute (CA)
- Ottawa Hospital Research Institute (CA)
Publication Details
- Journal
- Health Expectations
- Published
- 2025-12-01
- DOI
- https://doi.org/10.1111/hex.70529
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- University of Ottawa
- Government of Canada
- Muscular Dystrophy Canada
- European Commission
- Canada Research Chairs
- Canada First Research Excellence Fund
- Canadian Institutes of Health Research