PURPOSE: Brain tumors are associated with neurological sequelae and poor 
survival, contributing to distress in patients and their families. Our 
institution has conducted separate support groups for brain tumor patients and 
caregivers since 1999. This retrospective cohort study aimed to identify 
characteristics of brain tumor group participants in relation to attendance 
frequency, and compare themes of discussion in patient and caregiver groups.
METHODS: Demographic and medical characteristics were obtained from patient and 
caregiver group registration sheets and medical chart review. We quantified 
discussion topics recorded by group facilitators between 1999 and 2006, 
extracted themes, and examined similarities and differences in the way these 
themes were expressed.
RESULTS: A total of 137 patients and 238 caregivers attended the groups; about 
half attended more than one session. The chart review of a randomly selected 
subset of patient participants revealed that 57.5 % were married, 58.8 % had 
high-grade gliomas, and 55 % attended their first group within 3 months of 
diagnosis or at tumor progression. Both groups discussed physical and cognitive 
consequences, emotional reactions, relationships, coping, end of life, and 
practical issues. Caregivers discussed difficulties achieving self-care and 
caregiver burden.
CONCLUSIONS: Brain tumor support group facilitators can expect to encounter a 
range of medical and psychosocial issues in accommodating patients' and 
caregivers' diverse concerns. Separate brain tumor patient and caregiver groups 
may allow participants to explore those concerns without worrying about effects 
on their friends or family. It remains to be seen whether the groups meet the 
needs of attendees, and whether those who do not attend the groups have unmet 
needs.