2020
DOI: 10.21203/rs.2.19930/v1
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Results of a PREM to measure the rare disease patients’ caregivers experience: A Spanish cross-sectional study

Abstract: Objective To measure the experience of the person suffering from 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 [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience).Results … Show more

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