title: [Accessibility and quality to health social services in Italy for the patients with rare diseases: the opinion of associations].
abstract: This paper concerns the first phase of a study about the perception of social and health needs of people with rare diseases. The study was performed by the National Center for Rare Diseases at the Italian National Institute of Health (Istituto Superiore di Sanità - ISS). The project wants to be an example of collaboration between the research and the association worlds. Responsible of Associations of Patients and their relatives were asked their opinion about the accessibility and quality of important features of health and social services (accessibility and quality of diagnostic, pharmacological, psychological and rehabilitative interventions, social support, school and vocational training, information that was given to relatives). An ad hoc questionnaire was developed through focus groups. The questionnaire was completed by 108 associations (26,5% of the associations thar are recorded in the ISS database). Average scores showed satisfaction only for some variables and a negative gradient north-south was observed. The most frequent complaints were about information, quality of school and job training services and availability of psychological support. The study showed an high level of dissatisfaction with availability, quality and integration health and social services.
authors: Istituto Superiore di Sanità, Roma.
authors: E
authors: E
authors: Agazio
authors: P
authors: P
authors: Salerno
authors: F
authors: F
authors: Mirabella
authors: F
authors: F
authors: Gnessi
authors: P
authors: P
authors: Mastroiacovo
authors: P
authors: P
authors: Morosini
authors: G
authors: G
authors: Tarsitani
authors: D
authors: D
authors: Taruscio