Early diagnosis remains challenging, and patients reported to have changed up to 10 healthcare professionals before accessing their specialized center. Results: Three pediatric and five adult patients with early-onset RPE65-related IRDs as well as eight caregivers were enrolled 11 retinologists globally wrote 27 parallel charts in-depth interviews were done with five multidisciplinary healthcare professionals and one PA member.
#Nvivo 12 software
All data were entered into the Nvivo Software for coding and analysis. In-depth interviews were conducted with Patient Association (PA) members and multidisciplinary healthcare professionals. Narratives and parallel charts, together with a sociodemographic survey, were collected through the project webpage. Patients and Methods: 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. Thus, this Narrative Medicine (NM) project aimed to investigate the evolution of the care pathway and the expectations on genetic counseling and gene therapy by patients, caregivers, and healthcare professionals. Purpose: Timely detection and multidisciplinary management of RPE65-related inherited retinal disorders (IRDs) can significantly improve both disease management and patient care.
Healthcare Department, Fondazione ISTUD, via Paolo Lomazzo 19, Milano, 20124, Italy Meyer”, University of Florence, Florence, Italy 6Ophthalmology Department, Bambino Gesù IRCCS Paediatric Hospital, Rome, Italy 7Retina Italia Onlus Association, Milan, Italy 8Healthcare Department, Fondazione ISTUD, Milan, Italy 9Medical Department, Novartis Farma, Origgio, Italy Gemelli IRCCS, Rome, Italy 4Dipartimento Testa-collo e organi di senso, Università Cattolica del Sacro Cuore, Rome, Italy 5Paediatric Ophthalmology Unit, Children’s Hospital “A. Vanvitelli”, Naples, Italy 2Department of Neuroscience, Psychology, Drug Research and Child Health, University of Florence, Florence, Italy 3UOC Oftalmologia, Fondazione Policlinico Universitario A. Francesca Simonelli, 1 Andrea Sodi, 2 Benedetto Falsini, 3, 4 Giacomo Bacci, 5 Giancarlo Iarossi, 6 Valentina Di Iorio, 1 Dario Giorgio, 2 Giorgio Placidi, 3, 4 Assia Andrao, 7 Luigi Reale, 8 Alessandra Fiorencis, 8 Manar Aoun 9ġEye Clinic, Multidisciplinary Department of Medical, Surgical and Dental Sciences, University of Campania “L.