Background
In Australia, between 2008–2012 women with gynaecological cancer had a 68% chance of 5 year survival. Survivors may experience long-term impacts of cancer, treatments, and as a result of comorbid illness. Survivorship care plans (SCPs) have been internationally endorsed as an important tool to support enhanced post-treatment survivorship care, however implementation has been limited.
Objectives
To support broad implementation of SCPs we investigated survivors’ preferences regarding SCPs, in particular the most valued information elements, preferred delivery format, and intended use of a SCP. We also sought to determine whether there were groups of survivors who do not desire a SCP.
Methods
The study was conducted at a single site. Eligible patients from 10 clinical services who were generally up to 12 months following end of treatment, were approached. A purpose designed survey assessed survivors’ intended use of a SCP and preferences regarding format and content. Overall intended minimum sample size was 200.
Results
230 surveys were returned (RR 68%). Of these, almost 20% (n=45/230) were gynaecological patients. Remaining results refer to these 45 women. Most had a prior cervical cancer (57%) or endometrial cancer (36%). 76% had completed treatment within 6 months. Most (80%) had not received a SCP. 96% desired further information. Most common information requested was: ‘a list of tests I am going to have and when’ (76%), ’a summary of treatment received’ (67%), ‘a list of symptoms to watch out for and report’ (67%), ‘plan for follow-up appointments’ (67%), and ‘name and contact details of who to call if I have concerns’ (64%), ‘screening for other common cancers’ (60%) and ‘things I can do to look after myself’(58%). Most desired information referred to ‘strategies for reducing worry about cancer coming back’ (36%). Most common reasons for wanting a SCP included: ‘a record of cancer treatment’ (71%), ‘a reminder of things to do to look after myself’ (63%) and ‘to share with GP’ (63%). 88% indicated a preference for paper-based resources. Both brief (31%) and detailed versions (51%) were supported. 84% preferred delivery during a face-to-face discussion with a health professional.
Conclusions
While similar to international findings, results suggest alternate ways of providing information that survivors desire. Although the gynaecological cancer patient numbers are small, the findings mostly align with outcomes across other tumour groups surveyed. The most desired elements to include in a SCP have been defined. Results endorse providing survivors with information to support self-management. Much of the information survivors desire can be provided using readily available evidence based resources. A flexible approach to SCP interventions is justified. Results indicate the regard survivors place on SCPs as a communication tool to share with the GP. Opportunities for further research exist to better establish gynaecological cancer survivors’ requirements for SCPs, and clarify impact on their health outcomes.