title: [Quality of life in patients with unusual diseases: experience of nurses at the clinical research center for unusual diseases Aldo e Cele Daccò].
abstract: The Information Centre for Rare Diseases (CIMR) of the Mario Negri Institute, has promoted a specific study on quality of life of patients with Takayasu's arteritis, a chronic vasculitis with unclear etiology, that affects primarily aorta and its main branches. The aim of the study is to assess the QoL of Italian Takayasu's arteritis patients referring to the CIMR, using the SF-36 Health Survey. The SF-36 questionnaire was submitted to 61 Takayasu arteritis patients who covered the inclusion criteria of the study, with a response rate of 85.25%, (6 males and 46 females). Expectedly, the overall SF-36 scores of the study population were lower compared to the general Italian population specifically with respect to General Health and Vitality scales. More extensive research would be required to explore gender differences suggested by the study.
authors.affiliation: Laboratorio di Coordinamento Informazione e Diagnosi delle malattie rare, Centro di Ricerche Cliniche per le Malattie Rare Aldo e Cele Daccò Istituto Mario Negri, Ranica, Bergamo.
authors.forename: Sara
authors.initials: S
authors.lastname: Gamba
authors.forename: Laura
authors.initials: L
authors.lastname: Cicci
authors.forename: Rumen
authors.initials: R
authors.lastname: Stefanov
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013625:Takayasu Arteritis / Q000451:nursing