Background There is not a specific focus on Good Clinical Practice (GCP) in Huntington Disease (HD) in Italy. LIRH Foundation has been collecting, especially during the last ten years, much feedback about the patients’ journeys along the National Health System.
Aims To provide GCP Recommendations for Health Care Professionals (HCPs) and HD Centres, in line with patients‘ needs and expectations, as they are based on feedback from HD affected people and their families.
Methods After reviewing the existing literature and organizing two focus groups with patients and caregivers, we launched an online survey, addressed to individuals with undisclosed HD risk, patients, positive gene carriers, HD tested negative individuals and caregivers.
Results 313 respondents from 18 out of 20 Regions (52 with HD diagnosis, 57 with undisclosed HD risk, 53 positive gene carriers, 42 negative gene carriers, 107 unaffected partners, 1 preferred not to specify) accepted to participate. The top three reported best practices refer to humanity (36,2%) listening skills (29,2%) and psychological support (16,2%). The top three ‘must have’ of an HD Centre for the respondents are: Expertise (34%), Research (18%) and Multidisciplinarity (10%).
Conclusions The survey proved that there was the need to identify the key areas to be improved in the clinics for the sake of patients and families. Based on the survey’s responses, five GCP recommendations were issued. We can summarize them in five words 1) counselling, 2) follow-up, 3) family plan, 4) time, 5) network.
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