Patients affected by rare diseases have high unmet support needs in all areas studied. Multidisciplinary care, including psychological support and the provision of information regarding the healthcare system, treatment options, disease course and sexuality, might help address these needs.
Saturday, January 23, 2021
Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study
Miram K. Depping, Natalie Uhlenbusch, Yskert von Kodolitsch, Hans F. E. Klose, Victor-Felix Mautner & Bernd Löwe; Orphanet J Rare Dis 16, 44 (2021). doi:10.1186/s13023-020-01660-w