Assessment of the feasibility and acceptability, and pre-test of the utility of an individualized survivorship care plan (ISCP) for women with endometrial cancers during the transition of the end of active treatment to cancer survivorship

Abstract

The transition from the end of active treatment to survivorship holds many challenges for women with endometrial cancer (WEC) and for the organization of health services. The feasibility and acceptability of implementing an individualized survivorship care plan (ISCP) at the end of treatment are documented as potential solutions. The utility of an ISCP on three indicators (SUNS, FCRI, and HeiQ) was pre-tested by comparing two groups of WEC (control and exposed to the ISCP). The WEC exposed to the ISCP had fewer needs, a lesser intensity of fear of cancer recurrence, and better health-related empowerment skills three months after the end of treatment, as compared to the control group. Obstacles of time, resources, and organization were raised.

Background: The transition from the end of active treatment to cancer survivorship is a time of imbalance and turbulence for women with endometrial cancer (WEC). The transition to survivorship continues to be uncoordinated and the need for information about the side effects to watch for and the health risks is unmet. The implementation of an individualized survivorship care plan (ISCP) is suggested as an information and communication tool that could be a solution for facilitating the transition from the end of treatment to the beginning of survivorship.

Research objective and method: To assess and document the feasibility and acceptability of implementing an ISCP, qualitative data were gathered from WEC, oncology nurse navigators (ONN), and family doctors. A pre-experimental research design with a non-equivalent control group, an end of treatment (T0), and a three-month follow-up (T1) allowed us to pre-test its utility according to three indicators: (1) overall needs (SUNS); (2) fear of cancer recurrence (FCRI); and (3) empowerment (HeiQ) according to exposure to ISCP (control versus exposed) and to the time of measurement in the transition period (T0 versus T1).

Results: The sample was made up of 18 WEC for the group exposed to the ISCP and 13 WEC for the control group, 12 general practitioners, and two ONN. After ONN training, the ISCP completion time varied between 60 and 75 minutes, and the meeting for providing the ISCP lasted 45–60 minutes. The WEC supported the idea that meetings with the ONN and the ISCP were useful in meeting their needs for information and support. The family doctors supported its relevancy in favouring follow-up and better subsequent healthcare management, as well as in reassuring patients and avoiding a sense of abandonment at the end of treatment. Comparing the group exposed to the ISCP versus the control group, fewer reported needs can be observed: information: 35% versus 74%, p = .030; professional and financial: 6% versus 19%, p = .057; access and continuity: 9% versus 25%, p = .078; support: 18% versus 50%, p = .007, emotional: 13% versus 28%, p = .044). Moreover, at T1, empowerment according to the skill and technique acquisition sub-scale shows a higher trend (M = 75.00 (10.21) versus M = 64.06 (10.67), p = .097). The level of fear of recurrence remains above the clinically significant score of 13 for both groups at the two times of measurement.

Discussion: The ISCP is an informational tool that seeks to facilitate care-related communication and coordination between specialized and primary care. It is intended to facilitate the transition from the end of treatment to survivorship and survivors’ commitment to health-related empowerment behaviours. The feasibility and utility of implementing an ISCP are supported if additional professional, organizational, and financial resources are specified and mobilized.

Key words: transition, end of active treatment, cancer survivorship, individualized survivorship care plan