作者
Pedro Serrano-Aguilar, MM Trujillo-Martin, Juan Manuel Ramos-Goñi, Vinita Mahtani-Chugani, Lilisbeth Perestelo-Pérez, Manuel Posada-de la Paz
发表日期
2009/9/1
来源
Social science & medicine
卷号
69
期号
6
页码范围
920-925
出版商
Pergamon
简介
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 …
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