How will cancer survivors use survivorship care plans?

Abstract

Background: Survivorship care plans (SCPs) are internationally endorsed as an important tool to enhance post-treatment survivorship care. To support broad implementation of SCPs, we investigated survivors’ preferences regarding SCPs.

Material and methods: The study was conducted at a comprehensive cancer center. Eligible patients from 10 clinical services, generally up to 12 months following end of treatment (EOT) were approached in clinics or via telephone. A purpose-designed survey assessed survivors’ intended use of a SCP and preferences regarding format and content. Intended minimum sample size of 200.

Results: Two hundred and thirty surveys were returned (response rate 68%). Of the 230 participants, over 55% had completed treatment within six months, 35% between six and 12 months, and 10% were receiving ongoing treatments. Most (82%) had not received a SCP and more than one third (42%) reported receiving no information resources at EOT. Almost all (98%) desired further information. Most common information elements desired in a SCP: ‘list of symptoms to watch out for and report’ (76%), ‘summary of treatment received’ (70%) and ‘things I can do to look after myself’ (67%). Most common suggested uses were as: ‘a record of cancer treatment’ (63%), ‘a reminder of things to do to look after myself ’ (57%) and ‘to help me understand my cancer experience’ (56%). Over half (52%) would share the information with their general practitioner. Most indicated preference for paper-based SCPs (91%). There was support for both brief (36%) and detailed versions (42%). Over half requested the information be delivered in a face-to-face discussion with a health professional. Regular telephone support from the treating health care team was most commonly suggested as an additional service to support survivors after EOT.

Conclusions: Although similar to international findings, results suggest alternate ways of providing the information that survivors desire. Most desired SCP elements have been defined. A flexible approach to SCP interventions is justified.

Acknowledgments

The authors would like to thank the survivors and clinical services for their support of this study.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the manuscript.