TY - JOUR
T1 - Beyond the disease itself
T2 - A cross-cutting educational initiative for patients and families with rare diseases
AU - Rovira-Moreno, Eulàlia
AU - Abuli, Anna
AU - Codina-Sola, Marta
AU - Valenzuela, Irene
AU - Serra-Juhe, Clara
AU - Cuscó, Ivon
AU - Borregán, Mar
AU - Cueto-González, Anna
AU - Vendrell, Teresa
AU - López-Grondona, Fermina
AU - Brun-Gasca, Carme
AU - Brignani, Eduardo
AU - Martínez-Ribot, Laia
AU - Garci-Espejo, Regla
AU - Cruz, Jordi
AU - García-Arumí, Elena
AU - Tizzano, Eduardo F.
N1 - Publisher Copyright:
© 2020 National Society of Genetic Counselors
Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020
Y1 - 2020
N2 - Rare diseases (RDs) as a whole affect a huge number of individuals although each specific condition comprises a low number of individuals. As a consequence, funds allocated to expand research to all conditions are often limited. Several initiatives have emerged to invest more resources for research in RDs, but patients express unmet needs regarding educational initiatives, awareness support, and psychosocial resources. We developed an educational training program in the format of weekly sessions covering basic medical scientific knowledge and psychosocial aspects of RDs. The aim of this initiative was to assess its overall impact regarding knowledge, psychological issues, and participant satisfaction. Items were evaluated through surveys before and after the sessions. Here, we report the experience and impact of two editions of this initiative with a total of 37 participants. Our results show improvements in knowledge and better management of the psychological impact. Moreover, participants were able to exchange experiences and concerns, most of which were shared even though the RDs were different. Overall, the program was evaluated by the participants as a highly beneficial experience and all of them were interested in attending advanced editions.
AB - Rare diseases (RDs) as a whole affect a huge number of individuals although each specific condition comprises a low number of individuals. As a consequence, funds allocated to expand research to all conditions are often limited. Several initiatives have emerged to invest more resources for research in RDs, but patients express unmet needs regarding educational initiatives, awareness support, and psychosocial resources. We developed an educational training program in the format of weekly sessions covering basic medical scientific knowledge and psychosocial aspects of RDs. The aim of this initiative was to assess its overall impact regarding knowledge, psychological issues, and participant satisfaction. Items were evaluated through surveys before and after the sessions. Here, we report the experience and impact of two editions of this initiative with a total of 37 participants. Our results show improvements in knowledge and better management of the psychological impact. Moreover, participants were able to exchange experiences and concerns, most of which were shared even though the RDs were different. Overall, the program was evaluated by the participants as a highly beneficial experience and all of them were interested in attending advanced editions.
KW - communication
KW - education
KW - lived experience
KW - multidisciplinary
KW - psychosocial
KW - rare diseases
UR - http://www.scopus.com/inward/record.url?scp=85096718316&partnerID=8YFLogxK
U2 - 10.1002/jgc4.1354
DO - 10.1002/jgc4.1354
M3 - Artículo
C2 - 33142000
AN - SCOPUS:85096718316
SN - 1059-7700
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
ER -