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.