Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study.

Miriam K DeppingNatalie UhlenbuschYskert von KodolitschHans F E KloseVictor-Felix MautnerBernd Löwe

Published in: Orphanet journal of rare diseases (2021)

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.

Keyphrases

palliative care
healthcare
end stage renal disease
quality improvement
ejection fraction
newly diagnosed
chronic kidney disease
prognostic factors
peritoneal dialysis
health information
patient reported outcomes
depressive symptoms
social media