Elaborating patient information with patients themselves: lessons from a cancer treatment focus group.

ABSTRACT

OBJECTIVE: To assess the significance of patients' input in the elaboration of a patient information booklet. DESIGN: Qualitative study based on focus group discussions. SETTING: Centre Léon Bérard, a comprehensive cancer centre in the Rhône-Alpes region of France. PARTICIPANTS: (1) A multidisciplinary working group (oncologists, health economists and one clinical psychologist) wrote up initial information documents concerning possible breast cancer treatments. (2) A focus group comprised of patients with a history of breast cancer and healthy volunteers discussed their reactions to these documents. MAIN OUTCOME MEASURE: Analysis of the focus group's reactions according to key themes predetermined by the working group and related themes introduced by the focus group itself. RESULTS: The focus group proposed numerous, significant modifications to answer requests for additional information, clarification and better readability in the information booklets. DISCUSSION/CONCLUSIONS: This qualitative analysis showed a significant input of patients' perspective in the elaboration of patient information. It is also an additional support to the feasibility and appropriateness of the focus group technique. The next stage will be to test whether information documents produced here conform to the needs of patients currently undergoing treatment.