title: Focus group approach for developing written patient information in oncogenetics.
abstract: We report our experience in developing written patient information in the field of genetic oncology using a focus group approach. A scientific document addressing the issue about the finding of negative (i.e., inconclusive) results in BRCA1/2 diagnostic genetic testing was elaborated in three stages. The initial version written by a scientific committee was discussed in two focus group sessions, and then rewritten to incorporate the comments and suggestions collected. The discussions during focus group meetings were analyzed using a specific analysis grid exploring five dimensions. The input provided from the focus group greatly improved the initial version, leading to the production of a document containing appropriate scientific information that was accessible to patients. Focus groups are useful tools for developing good-quality documents in the complex setting of genetic oncology.
authors.affiliation: Université de Lyon; Université Lyon 1; CNRS; UMR 5558; Centre Léon Bérard, Unit of Prevention and Genetic Epidemiology, Lyon, France.
authors.forename: Christine
authors.initials: C
authors.lastname: Lasset
authors.forename: Marie
authors.initials: M
authors.lastname: Charavel
authors.forename: Valérie
authors.initials: V
authors.lastname: Bonadona
mesh_terms: D001294:Attitude to Health; D017144:Focus Groups / Q000379:methods*; D005826:Genetics, Medical / Q000193:education*; D006801:Humans; D009857:Oncogenes; D010174:Pamphlets; D010353:Patient Education as Topic