Elaborating patient information with patients themselves: lessons from a cancer treatment focus group.
OBJECTIVE
To assess the significance of patients' input in the elaboration of a patient information booklet.


METHODS
Qualitative study based on focus group discussions.


METHODS
Centre Léon Bérard, a comprehensive cancer centre in the Rhône-Alpes region of France.


METHODS
(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.


METHODS
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.


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.
Moumjid
Nora
N
GRESAC (Research Group in Health Economics and Networks in Cancer Care, CNRS, UMR 5823), Centre Léon Bérard, Comprehensive Cancer Centre and University Claude Bernard Lyon 1, Lyon, France. ferdjaou@lyon.fnclcc.fr
Morelle
Magali
M
Carrère
Marie-Odile
MO
Bachelot
Thomas
T
Mignotte
Hervé
H
Brémond
Alain
A
D002173:Cancer Care Facilities; D017144:Focus Groups; D005602:France; D006801:Humans; D007255:Information Services / Q000592:standards*; D009369:Neoplasms / Q000188:drug therapy / Q000532:radiotherapy / Q000601:surgery; D010174:Pamphlets; D010353:Patient Education as Topic / Q000379:methods / Q000592:standards*; D010358:Patient Participation; D036301:Qualitative Research