Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey
Adults with NF1 experience significant sociodemographic disparities in care, and patients of all ages attending NF1 specialty clinics receive more recommended health surveillance. Given the limited access to specialty NF clinics, quality improvement efforts are needed to increase access for underserved adults and improve provision of recommended health surveillance outside specialty clinics.
Authors
- Lori B. Chibnik (ORCID: https://orcid.org/0000-0001-6293-806X)
- Heather B. Radtke (ORCID: https://orcid.org/0000-0003-1557-7390)
- Yidan Ma
- Kaleb Yohay (ORCID: https://orcid.org/0000-0001-5560-3392)
- Justin T. Jordan (ORCID: https://orcid.org/0000-0001-6198-817X)
- Scott R. Plotkin (ORCID: https://orcid.org/0000-0002-6109-6419)
- Vanessa L. Merker (ORCID: https://orcid.org/0000-0002-4542-5227)
- Nicole J. Ullrich (ORCID: https://orcid.org/0000-0001-5623-3362)
- Kate Kelts
Institutions
- Boston Children's Hospital (US)
- Harvard University (US)
- MGH Institute of Health Professions (US)
- Medical College of Wisconsin (US)
- NYU Langone Health (US)
- Massachusetts General Hospital (US)
- Children's Tumor Foundation (US)
- Center for Cancer Research (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-04-16
- DOI
- https://doi.org/10.1186/s13023-025-03677-5
- Citations
- 2
- Primary Topic
- Neurofibromatosis and Schwannoma Cases
- Type
- article
- Field-Weighted Citation Impact
- 2.78