Research article summary (published 30 Aug 2007):

[Accessibility and quality of Italian health and social services: the experiences of patients with neurofibromatosis type 1 and of their relatives]

(Accessibilità e qualità dei servizi socio-sanitari italiani: le esperienze dei pazienti con neurofibromatosi tipo 1 e dei loro familiari.)

Full 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.

Author information

Author/s: Kodra, Y (Y); Salerno, P (P); Agazio, E (E); Mirabella, F (F); Taruscio, D (D);

Affiliation: National Centre Rare Diseases, Department of Cell Biology and Neurosciences, Istituto Superiore di Sanità, Rome, Italy.

Journal and publication information

Publication Type: Comparative Study; English Abstract; Journal Article

Journal: Annali di igiene : medicina preventiva e di comunità (Ann Ig), published in Italy. (Language: ita)

Reference: -2007 Sep-Oct; vol 19 (issue 5) : pp 443-50

Dates: Created 2008/01/23; Completed 2008/02/08;

PMID: 18210774, status: MEDLINE (last retrieved date: 2/18/2009)

Sourced from the National Library of Medicine. Abstract text and other information may be subject to copyright.

External Links for this article
(including full text providers, if available):

Click Electronic Full-text Provider Links to see options for finding the electronic full text links to this article. Note there may be a subscription or fee required for access to the full text. See our FAQ for information on finding FREE full text articles.

This article may also be located in paper journal collections available in many libraries. Use the Journal and Publication Information above to find the full article.

MeSH headings (categories)

This article was linked to the MeSH Headings (categories) shown below.

Adolescent Adult Child Child, Preschool Family Focus Groups Health Services - standards Health Services Accessibility Humans

Italy Middle Aged Neurofibromatosis 1 - therapy Patient Education as Topic Patient Satisfaction Pilot Projects Questionnaires Social Work - standards Vocational Education

Note: Bold headings indicate primary MeSH headings or qualifiers.

Related articles

These are the most related articles currently in our database:

• [Contemporary social medical problems of the family and issues in medical-social services] 29 Jun 1994
• [Health council: conclusions after 3-year experience] 28 Nov 1994
• [Accessibility and quality to health social services in Italy for the patients with rare diseases: the opinion of associations] 27 Feb 2005
• [Banks of biological samples should be used with respect to donors] 29 Jun 2001
• [Quality standards in the treatment of lip/palate cleft] 29 Jun 1997
• WHO activities for prevention of deafness and hearing impairment in children. 30 Dec 2000
• The mind-body dichotomy reified: an illustrative case. 29 Sep 1978
• [Health education, prevention, health promotion] 29 Sep 2006
• Knowledge, uptake and availability of health and social services among Asian Gujarati and white elderly persons. 27 Feb 1997
• Growing up and living with cystic fibrosis: everyday life and encounters with the health care and social services--a qualitative study. 30 Mar 2003

See 100+ related articles.

Related Article Map

Legend: - FREE Full text Article. - Abstract only. - Title only. More help.

See a larger map of 100+ related articles.