Differences in illness-related knowledge of breast cancer patients according to their involvement in self-help groups

OBJECTIVE. There is little evidence of the gain in illness-related knowledge obtained in breast cancer self-help groups. This paper seeks to explore whether participants in self-help groups know more about breast cancer than non-participants and to examine the level of knowledge of leaders of self-help groups in comparison to the other two groups. METHODS. A sample of 727 women affected by breast cancer was interviewed with a self-administered questionnaire assessing knowledge on disease, prevention, and aftercare. The interviewing took place during three different surveys conducted between 2005 and 2009. The data of the second and third survey were used in order to create a larger data base and to include self-help group leaders. RESULTS. Participants in self-help groups knew significantly more than non-participants, although only in the subtests lymph edema and breast-examination. Leaders of support groups scored highest in all subtests. Involvement in a support group was most decisive for respondents' knowledge, but other factors such as age, education, and medical history also had effects. CONCLUSION. Self-help groups provide a considerable potential for acquiring illness-related knowledge. As the participation rate in German breast cancer self-help groups is still quite low, it seems reasonable to generate more interest in this kind of support.