Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias.

Full Abstract

This study aims to incorporate patients' perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers. The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life. Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients' needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians' information needs and patients' expectations.

Author information

Author/s: Serrano-Aguilar, P (P); Trujillo-Martín, M M (MM); Ramos-Goñi, J M (JM); Mahtani-Chugani, V (V); Perestelo-Pérez, L (L); Posada-de la Paz, M (M);

Affiliation: Planning & Evaluation Unit, Canary Islands Health Authority, Santa Cruz de Tenerife, Canary Islands, CIBERESP, Spain. pserrano(-atsign-)gobiernodecanarias.org

Journal and publication information

Publication Type: Journal Article; Research Support, Non-U.S. Gov't

Journal: Social science & medicine (1982) (Soc Sci Med), published in England. (Language: eng)

Reference: 2009-Sep; vol 69 (issue 6) : pp 920-5

Dates: Created 2009/09/07; Completed 2009/11/02;

PMID: 19647357, status: MEDLINE (last retrieval date: 11/2/2009, IMS Date: )

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.