Caregiver burden and familial impact in Down Syndrome Regression Disorder
Caregivers of individuals with DSRD experience significantly greater distress and burden compared to those caring for individuals with DSN. The elevated risk of depression, combined with reduced quality of life and increased burden, underscores the multimodal nature of the challenges faced by this population.
Authors
- Eileen A. Quinn
- Panteha Hayati Rezvan (ORCID: https://orcid.org/0000-0001-6360-8388)
- Saba Jafarpour (ORCID: https://orcid.org/0000-0001-8029-785X)
- Jonathan Douglas Santoro (ORCID: https://orcid.org/0000-0002-8350-8234)
- Kungta Chow
- Ruth C. Brown (ORCID: https://orcid.org/0000-0001-8614-1645)
- Benjamin N. Vogel
- Lina Nguyen
- Miguel Lucas (ORCID: https://orcid.org/0000-0003-0987-8971)
- Lilia Kazerooni (ORCID: https://orcid.org/0009-0003-4147-5395)
- Natalie K. Boyd
Institutions
- University of Southern California (US)
- Children's Hospital of Los Angeles (US)
- Virginia Commonwealth University (US)
- University of Toledo (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-03-14
- DOI
- https://doi.org/10.1186/s13023-025-03644-0
- Citations
- 4
- Primary Topic
- Family and Disability Support Research
- Type
- article
- Field-Weighted Citation Impact
- 9.23