Experiences of care delivery: endometrial cancer survivors at end of treatment.

OBJECTIVES: To gain a better understanding of the experiences of endometrial cancer patients at the transition from acute cancer treatment to well follow up care.
METHODS: Cross-sectional mixed methods (survey and focus groups) study to examine and describe endometrial cancer survivor's experience of the transition to survivorship including their knowledge of survivorship issues, feeling of preparedness, health related distress and perspectives on care delivery and end of treatment transitions.
RESULTS: Survey data (n=169) and focus group data (n=14) suggests that a large majority of endometrial cancer survivors are not provided with any formal transition planning or documentation and as a result feel ill-prepared for the post treatment phase of survivorship. The majority of women in this study reported that they were not aware of their risk for recurrence or how to monitor for this and they were not provided with clear information in this regard. They were also unsure of the health risks and long-term and late effects of cancer and how to find information about them and resources to manage them. A substantial minority (30-40%) of women continued to be frustrated and discouraged by their health problems. Few participants had been told about the resources and supports that are available to them and their families/friends or were not provided with any information about self-management tools or education that could be helpful for them in their recovery.
CONCLUSIONS: Both the quantitative and qualitative results in our study suggest that quality of care for endometrial cancer survivors must begin to shift from a purely disease-focused approach to a wellness-centered approach that provides coordinated, patient-centered, comprehensive care and more formalized transition care planning.