Care Pathway of RPE65-Related Inherited Retinal Disorders from Early Symptoms to Genetic Counseling: A Multicenter Narrative Medicine Project in Italy.
IRDs management
diagnosis
inherited retinal dystrophies
multidisciplinary
patient’s pathway
Journal
Clinical ophthalmology (Auckland, N.Z.)
ISSN: 1177-5467
Titre abrégé: Clin Ophthalmol
Pays: New Zealand
ID NLM: 101321512
Informations de publication
Date de publication:
2021
2021
Historique:
received:
29
07
2021
accepted:
11
11
2021
entrez:
9
12
2021
pubmed:
10
12
2021
medline:
10
12
2021
Statut:
epublish
Résumé
Timely detection and multidisciplinary management of This project was conducted between July and December 2020, involving five Italian eye clinics specialized in IRDs, targeted pediatric and adult patients, their caregivers, attending retinologists and multidisciplinary healthcare professionals. Narratives and parallel charts, together with a sociodemographic survey, were collected through the project webpage. In-depth interviews were conducted with Patient Association (PA) members and multidisciplinary healthcare professionals. All data were entered into the Nvivo Software for coding and analysis. Three pediatric and five adult patients with early-onset The project investigated the
Identifiants
pubmed: 34880596
doi: 10.2147/OPTH.S331218
pii: 331218
pmc: PMC8648274
doi:
Types de publication
Journal Article
Langues
eng
Pagination
4591-4605Informations de copyright
© 2021 Simonelli et al.
Déclaration de conflit d'intérêts
FS received honoraria from Novartis Pharmaceuticals, Italy, for holding webinars and serving advisory boards. AS received honoraria from Novartis Pharmaceuticals, Italy, for serving on advisory boards. BF, received honoraria from Novartis Pharmaceuticals, Italy, for holding webinars and a lecture fee from UVET GBT, Milan, Italy. GB, and GI have received honoraria from Novartis Pharmaceuticals, Italy, for holding webinars; in addition GB received personal fees from Maple Health, personal fees from Kantar health, outside the submitted work. MA is employees of Novartis Pharmaceuticals, Italy, and Region Europe.
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