Patient involvement in French Lung cancer guidelines: A qualitative study

Abstract

7603 Background: Clinical Practice Guidelines (CPGs) are increasingly used and regarded as mandatory references for clinical decisions and patient centered cancer care. Discrepancies between recommendations and patient’s preferences have been found to be an important factor of non-compliance with CPGs. To improve the quality and efficiency of cancer CPGs, the French Standards, Options and Recommendations (SOR) program has adapted methods validated in other settings to involve patients in the development of guidelines. Objective: To assess barriers and facilitators of involving patients in the Guideline Development Group (GDG) for a CPG on treatment of early-stage non-small cell lung cancer (NSCLC). Methods: Qualitative study (January 2006 to March 2007) combining 8 direct observations of GDG meetings and 12 semi-directive interviews with the participating patients and experts. Results: The barriers and facilitators indentified could be grouped into four categories (see table). Conclusion: Our observations concerning patient involvement in CPGs were similar to those made in other contexts and permitted to clarify some of the parameters that govern patient involvement in French CPG development. Barriers and facilitators Dimensions Facilitators Barriers Topic of CPG - Patient’s feeling of shame linked with NSCLC - Poor prognosis - Technicity of the topic Method of patient involvement - Recruitment means - Gap between the role of expert assigned to patients and their capability to participate - Training - Support - Time for appropriation - Small numbers of patients Patients’ characteristics - Availability Lack of concern and interest - Strong concern and interest for the topic Interactions within the GDG - Mentioning professional experience Technical analysis and discussion of the scientific data - Listening and explanation by experts - Sense of belonging No significant financial relationships to disclose.