Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study.

Mercedes Guilabert MoraAlba Martínez-GarcíaMarina Sala-GonzálezOlga SolasJosé Joaquín Mira

Published in: Orphanet journal of rare diseases (2021)

There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

Keyphrases

patient reported
end stage renal disease
palliative care
ejection fraction
newly diagnosed
healthcare
chronic kidney disease
prognostic factors
peritoneal dialysis
patient reported outcomes