Article
Patient participation in medical guideline development on cystic fibrosis
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Authors
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F. Brunsmann
- Charité Universitätsmedizin Berlin, Berlin, Germany; Allianz Chronischer Seltener Erkrankungen (ACHSE) E.V. Germany
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W. Bremer
- Mukoviszidose E.V., The German CF Association Germany
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J. Bend
- Mukoviszidose Institut GGmbH, Bonn, Bonn, Germany
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I. Kopp
- AWMF-Institut Für Medizinisches Wissensmanagement
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E. Rietschel
- Children´s Hospital, University of Cologne
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F.M. Müller
- Klinik für Kinder- und Jugendmedizin, Klinikum Itzehoe
| Published: | July 10, 2012 |
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| Published with erratum: | July 31, 2012 |
Outline
Text
Background: Cystic fibrosis (CF) is a life-shortening inherited rare disease. Procedural know-how of including patient experiences into the development of guidelines is still incomplete, especially in rare diseases.
Context: Procedural elements were established to make CF patient experiences on medical care in the field of early Pseudomonas lung infection available for the development of an evidence- and consensus-based guideline.
Description of best practice: A team of two patient representatives having personal experience with CF and with >10 years of organizational experience in a national patient organization and one scientist with experience in the field of patient participation was formed. By screening of memorised individual patient reports on quality of care, key issues were identified during conference calls and summarised in a 6-page document. The document was discussed with the multidisciplinary guideline development group (GDG) in a consensus conference. The GDG formed a subgroup with medical experts and patient representatives. This group was tasked to transfer the patient input into the process of guideline development.
Lessons for guideline developers, adaptors, implementers, and/or users: CF patient experiences could be successfully included in the development of a guideline on early Pseudomonas lung infection. The following procedural aspects have shown to be beneficial for effective patient participation: early establishment of a team including experienced patient representatives and a supporting member with methodological knowledge in patient participation; identification and precise description of key issues based on patient experience; early submission of patients' input to the GDG.
