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

OBJECTIVE: To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Fe...

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Dettagli Bibliografici
Pubblicato in:Orphanet J Rare Dis
Autori principali: Guilabert, Mercedes, Martínez-García, Alba, Sala-González, Marina, Solas, Olga, Mira, José Joaquín
Natura: Artigo
Lingua:Inglês
Pubblicazione: BioMed Central 2021
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Accesso online:https://ncbi.nlm.nih.gov/pmc/articles/PMC7866674/
https://ncbi.nlm.nih.gov/pubmed/33546736
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-021-01700-z
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