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.

Lymphoma survivors’ experience of participation in a home-based intervention post-chemotherapy

“…Another theme to emerge was the need for information, in particular advice on diet. A survey of 230 cancer survivors [22] also showed that almost all respondents (98%) desired further information following treatment, including diet and exercise. It has been pointed out that after completing medical treatment, survivors report that they are more likely to learn about cancer-specific information on their own, rather than from medical personnel [23].…”

Advance care planning within survivorship care plans for older cancer survivors: A systematic review

“…to less than 20% of a sample of patients with different cancers in a study in Australia [15] to only 11% in an American sample of brain tumour survivors [18]. This may be because the evidence behind their effectiveness remains unclear [12].…”

“…Elements perceived as being important by patients to incorporate into a SCP include a watch list of symptoms and signs, a treatment summary and preventative healthcare recommendations [14,15], though only half of SCPs provide all these elements and often without sufficient detail [8]. Despite recommendations from several bodies, their proposed potential benefits and a near universal desire among survivors for information in the form of a SCP [15,16], few patients report having received one [15]. Use varies from as high as 35%…”

“…A lack of training, experience and confidence among healthcare professional are also barriers to both [26,50,51]. Evidence suggests that like ACP discussions [26], SCPs may not be acceptable to all patients, particularly given that a small minority prefer not to receive any information at end of treatment [15]. The optimal timing of survivorship care planning is uncertain and should be carefully considered, particularly as many older cancer survivors experience anxiety regarding the symbolic nature of a cancer diagnosis in terms of their own mortality and likelihood of recurrence and may not wish to discuss it openly [52].…”

Health status and needs of cancer survivors attending the Sydney Survivorship Centre clinics and programmes: a protocol for longitudinal evaluation of the centre’s services

“…Despite recommendations from oncology organisations that SCP should be used, there is limited evidence that they improve long-term outcomes for cancer survivors although survivor satisfaction with the SCP is generally high. 10 …”