Patient reported late effects of gynecological cancer treatment.

OBJECTIVE: There are a large number of gynecological cancer survivors in the United States living with long term sequelae of their treatment. Patient reported outcomes are essential in capturing patients' experiences in order to address survivorship issues; however, patient reported toxicities are not often collected or reported.
METHODS: A web-based survivorship care plan tool was used to collect patient reported toxicity data for 390 women who had undergone treatment for gynecological cancer. Demographic, diagnosis, treatment modality and toxicity data were reviewed.
RESULTS: Median age of diagnosis was 49 years, and 88% (n=334) of the women were Caucasian and had attended at least some college. Only 10% (n=38) had previously been offered a survivorship care plan or survivorship information. Almost half of the patients had ovarian cancer (46%, n=180), 23% had cervical cancer (n=92) and 28% had uterine cancer (n=109). Late effects most commonly reported for all gynecological malignancy survivors using this tool were cognitive changes, sexual side effects, changes in bowel patterns, peripheral neuropathy and skin changes.
CONCLUSION: Women with gynecological cancers experience a plethora of late effects; however, very few of them have access to a survivorship plan to cope with these issues. Patient reported side effects, especially sexual dysfunction, occur more commonly than previously reported. Patient-focused tools to evaluate these side effects and access to survivorship plans are needed for comprehensive care of gynecologic cancer survivors.