Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias☆
Section snippets
Presentation of the case
Degenerative ataxias (DA) are an heterogeneous group of genetically-based rare diseases with diverse patterns of inheritance and with many genes and genetic loci implicated (Cuadrado-Gamarra, Sevillano-García, & de Pedro-Cuesta, 1999). Overall, their prevalence in Spain is 20.2 cases/100.000 population (López-Vega, Calleja, Combarros, Polo, & Berciano, 1988). DA are clinically characterized by progressive ataxia resulting from degeneration of the cerebellum, brain stem and spino-cerebellar
Methodology
A consultation was conducted between January and May 2007 with a sample of DA patients recruited from different regions of Spain. This study was approved by the Ethics Committee of the Canary Islands since its coordination was carried out by the Planning and Evaluation Unit of the Canary Islands Health Service. As part of the recruitment process, an attempt was made to enroll as many patients as possible, and was managed by the regional patient associations in Spain (Hispataxia and the Spanish
Results
A total of 53 patients were invited to participate. The participation rate was 100% (53/53) for the three rounds of the Delphi method. Patients’ general characteristics are shown in Table 1: their mean age was 39.2 ± 2.0 years, 60.4% (32/53) were women and most of them (67.9%) suffered Friedreich's ataxia. Mean time of disease progression was 15.0 ± 1.6 years and 41.5% (22/53) required some help to perform activities of daily living (ADL). Participants’ place of residence was distributed across 12
Analysis and discussion
The case example provides a learning experience concerning the feasibility and efficiency of patient involvement, by means of the Delphi method, in designing a systematic review of the scientific literature. The participatory process was found to be particularly effective in enhancing the design and conduct of our research. According to the James Lind Alliance proposals, lived experiences of individual patients with their illnesses extended the value of the systematic review ensuring that it
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This work was supported by the Ministry of Health and Consumption of Spain in cooperation with the “Fundación Canaria de Investigación y Salud” (FUNCIS), in the framework of the Quality Plan for the National Health Service.