What do social media savvy cancer survivors tell us about the state of survivorship programs?

Abstract

57 Background: Patients treated for cancer are surviving their disease in increasing numbers. The 2005 Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor - Lost in Transition resulted in a call to develop survivorship programs. The Commission on Cancer (CoC) standard 3.3 became effective in 1/2015 requiring the delivery of a survivorship care plan (SCP) at the completion of treatment. Many cancer patients use social media (SM) as a way to obtain support and information. We sought to determine if SM savvy patients have received a SCP. Methods: An IRB-approved survey was conducted via the online tool SurveyMonkey between 3/21/2016 and 4/2/2016. Patients were invited to participate via SM outlets reaching cancer-related communities including Twitter chats, Facebook groups, blogs, and targeted emails. Cochran-Armitage Trend test, exact version, was performed by year for % of survivors receiving a SCP. Results: A total of 312 patients responded. 63% had completed their treatment (excluding endocrine therapy). Of a total of 194 individuals only 11.8% (23) were given a SCP at the end of treatment. A breakdown by treatment completion year is given below. Of those who did not receive a care plan 65% (112/172) answered that it would still be helpful to receive one. Most SCPs (86%) were supplied in paper form. However, patient-reported preferences for SCP delivery were paper (50%), online patient portal (41%), and email (9%). Conclusions: Despite the IOM report and CoC standard 3.3, the majority of SM savvy cancer survivors (88.2%) do not receive SCPs. In the respondents to this survey, there was no significant increase from 2015 onwards, p = 0.11, confirming an Advisory Board survey that just over 1/3 of programs felt confident that they could implement 3.3 by 2015. The CoC has updated its standard such that 25% of eligible patients should receive a plan by 12/31/2016. According to these data, that goal of 25% may not be achieved. [Table: see text]