Care-seeking behavior of Japanese gynecological cancer survivors suffering from adverse effects

BACKGROUND: Post-treatment follow-up visits for gynecological cancer survivors should provide opportunities for management of adverse physical/psychological effects of therapy and early recurrence detection. However, the adequacy of such visits in Japan is poorly documented. We qualitatively explored care-seeking experiences of Japanese gynecological cancer survivors and deduced factors influencing care-seeking behaviors and treatment access. METHODS: We conducted 4 semi-structured focus groups comprising altogether 28 Japanese gynecological cancer survivors to collect a variety of participants’ post-treatment care-seeking behaviors through active interaction with participants. Factors influencing access to treatment for adverse effects were analyzed qualitatively. RESULTS: Survivors sought care through specialty clinic visits when regular post-treatment gynecological follow-ups were inadequate or when symptoms seemed to be non-treatment related. Information provided by hospital staff during initial treatment influenced patients’ understanding and response to adverse effects. Lack of knowledge and inaccurate symptom interpretation delayed help-seeking, exacerbating symptoms. Gynecologists’ attitudes during follow-ups frequently led survivors to cope with symptoms on their own. Information from mass media, Internet, and support groups helped patients understand symptoms and facilitated care seeking. CONCLUSIONS: Post-treatment adverse effects are often untreated during follow-up visits. Awareness of possible post-treatment adverse effects is important for gynecological cancer survivors in order to obtain appropriate care if the need arises. Consultation during the follow-up visit is essential for continuity in care.