title: [Accessibility and quality of Italian health and social services: the experiences of patients with neurofibromatosis type 1 and of their relatives].
abstract: Opinions of patients and relatives about their experiences with health and social services were assessed in a pilot study. The study was carried out in collaboration with two patients' Associations of Neurofibromatosis, "Neurofibromatosi--Onlus" and "LINFA--Onlus". An ad-hoc questionnaire was developed by the Italian National Centre of Rare Diseases and was sent to the Responsibles of the two aforementioned patients' Associations. The Responsibles distributed the questionnaire to their members by mail. The questionnaire investigated, using 5-level Likert scales, the following topics: quality and accessibility of health services (diagnostic exams, pharmacological therapies, rehabilitation, psychological support), quality and accessibility of social services (school, vocational training, health information, information on legal matters and rights). Finally, the questionnaire investigated also opinions about improvements of public health and social services in the last three years. Overall, 79 out 144 questionnaires were filled by patients or their relatives. The most frequent negative experiences concerned vocational training and both health and legal information. The most frequent positive opinions were reported for the human relationships with health professionals. This pilot study seems to point out a promising way to investigate systematically opinions of patients suffering from rare diseases and their relatives.
authors.affiliation: National Centre Rare Diseases, Department of Cell Biology and Neurosciences, Istituto Superiore di Sanità, Rome, Italy.
authors.forename: Y
authors.initials: Y
authors.lastname: Kodra
authors.forename: P
authors.initials: P
authors.lastname: Salerno
authors.forename: E
authors.initials: E
authors.lastname: Agazio
authors.forename: F
authors.initials: F
authors.lastname: Mirabella
authors.forename: D
authors.initials: D
authors.lastname: Taruscio
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005190:Family; D017144:Focus Groups; D006296:Health Services / Q000592:standards*; D006297:Health Services Accessibility; D006801:Humans; D007558:Italy; D008875:Middle Aged; D009456:Neurofibromatosis 1 / Q000628:therapy; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D010865:Pilot Projects; D012947:Social Work / Q000592:standards*; D011795:Surveys and Questionnaires; D014829:Vocational Education