Prospective study to evaluate impact of support group participation in women with gynecological cancer.

Abstract

243 Background: Unlike breast cancer support group literature, there is no data in women with gynecologic cancers who have different perspective about their disease and therapy. We have a well-established (10 years old) active grass root level support group unique to women with gynecologic cancers that meets monthly. Our goal was to investigate perceived benefits of support group participation. Methods: We developed a prospective questionnaire to evaluate the CSRA Gynecologic Oncology Support Group (CGOSG) participant’s perceived effects of attending the group on their side effects and disease status. The questionnaire was distributed to patients attending CGOSG meetings over a 4 month period. 47 surveys were collected for analysis; Wilcox rank sum test was used as appropriate. Results: The common cancers were 52% ovarian, 26% endometrial and 62% were currently on therapy. The 3 top reasons that patients attended CGOSG were physician driven (28%), to meet other women with the same diagnosis (26%) and to learn more about their cancer (22%). The top 3 expectations of patients were emotional support (28%), bonding/companionship (21%), and cancer education (14%). The top 3 concerning physical side effects from their cancer or therapy were fatigue (21%), memory loss (14%), and peripheral neuropathy (14%). Patients with more than 5 visits reported that CGOSG participation improved their most concerning physical side effect (fatigue) with a median score of 7.5 ± 4 out of 10. The top 3 concerning emotional side effects identified were fear of recurrence (26%), living with uncertainty (20%) and defining a new sense of normal (15%). Patients reported the CGOSG improved their most concerning emotional side effect (fear of recurrence) with a median score of 9 ± 2 out of 10. Patients with more than one visit, not on treatment reported a higher quality of life score (p = 0.001) and perceived a positive impact on cancer therapy (p = 0.02) compared to patients on treatment. Conclusions: This is a first of a kind attempt to understand the impact of a well-organized support group on women with gynecological cancers which indicates that these women struggle with fear of recurrence and uncertainty, but are able to find some solace.