Nicole A Kinnane1, Amanda J Piper1, Michael Jefford1,2,3. 1. a Australian Cancer Survivorship Centre, a Richard Pratt Legacy , Peter MacCallum Cancer Centre , Melbourne , Victoria , Australia. 2. b Department of Cancer Experiences Research , Peter MacCallum Cancer Centre , Melbourne , Victoria , Australia. 3. c Sir Peter MacCallum Department of Oncology , The University of Melbourne , Parkville , Victoria , Australia.
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.
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.