Rare diseases from the community pharmacy

Abstract

Introduction: the visibility of Rare Diseases at a multidisciplinary level and their humanization are one of the challenges set out in the 2030 Agenda of the United Nations. Community pharmacists need to renew themselves and promote skills, such as individualized pharmaceutical care techniques, which are essential for the support of these patients. The aim of this research is to identify the socio-health needs of families belonging to rare disease associations who go to the community pharmacy in Spain.

Method: Observational and transversal study by a digital questionnaire to users of the Association of Rare Diseases D'genes, through the Association and the Official Associations of Pharmacists, n=253.

Results: Rare diseases are distributed throughout the territory with a high dispersion. Most patients or relatives usually visit the community pharmacy more than twice a month. These families usually trust their pharmacy for more than three years and do not encounter difficulties in obtaining their treatment. The profile of the patients who visit the pharmacy is very heterogeneous, but the majority of family members claim to know and focus only on their social and health needs. In relation to their levels of satisfaction, the reception, discretion in treatment, time of attention and farewell are the best valued factors.

Conclusions: The professional pharmacist must possess, scientific and technical skills, needs to promote values such as empathy, social skills or listening skills, to be able to provide personalized pharmaceutical care to families with rare diseases and manage to humanize the community pharmacy of the 21st century.