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

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  • Serrano-Aguilar, P.
  • Trujillo-Martín, M.M.
  • Ramos-Goñi, J.M.
  • Mahtani-Chugani, V.
  • Perestelo-Pérez, L.
  • Posada-de la Paz, M.

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.

Suggested Citation

  • Serrano-Aguilar, P. & Trujillo-Martín, M.M. & Ramos-Goñi, J.M. & Mahtani-Chugani, V. & Perestelo-Pérez, L. & Posada-de la Paz, M., 2009. "Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias," Social Science & Medicine, Elsevier, vol. 69(6), pages 920-925, September.
    • Handle: RePEc:eee:socmed:v:69:y:2009:i:6:p:920-925
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    References listed on IDEAS

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    1. Boote, Jonathan & Telford, Rosemary & Cooper, Cindy, 2002. "Consumer involvement in health research: a review and research agenda," Health Policy, Elsevier, vol. 61(2), pages 213-236, August.
    2. Pivik, Jayne & Rode, Elisabeth & Ward, Christopher, 2004. "A consumer involvement model for health technology assessment in Canada," Health Policy, Elsevier, vol. 69(2), pages 253-268, August.
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    4. Caron-Flinterman, J. Francisca & Broerse, Jacqueline E.W. & Bunders, Joske F.G., 2005. "The experiential knowledge of patients: a new resource for biomedical research?," Social Science & Medicine, Elsevier, vol. 60(11), pages 2575-2584, June.
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    1. Joan Carlini & Rachel Muir & Annette McLaren-Kennedy & Laurie Grealish, 2023. "Researcher Perceptions of Involving Consumers in Health Research in Australia: A Qualitative Study," IJERPH, MDPI, vol. 20(10), pages 1-16, May.
    2. Linertová, Renata & Serrano-Aguilar, Pedro & Posada-de-la-Paz, Manuel & Hens-Pérez, Manuel & Kanavos, Panos & Taruscio, Domenica & Schieppati, Arrigo & Stefanov, Rumen & Péntek, Márta & Delgado, Claud, 2012. "Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study," Health Policy, Elsevier, vol. 108(1), pages 19-26.
    3. Bullinger, Angelika C. & Rass, Matthias & Adamczyk, Sabrina & Moeslein, Kathrin M. & Sohn, Stefan, 2012. "Open innovation in health care: Analysis of an open health platform," Health Policy, Elsevier, vol. 105(2), pages 165-175.
    4. Boote, Jonathan & Baird, Wendy & Sutton, Anthea, 2011. "Public involvement in the systematic review process in health and social care: A narrative review of case examples," Health Policy, Elsevier, vol. 102(2), pages 105-116.

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