de Rooij BH, Ezendam N, Nicalaije K, et al. Effects of Survivorship Care Plans on patient reported outcomes in ovarian cancer during 2-year follow-up — The ROGY care trial. Gynecol Oncol. 2017;S0090-8258(17):30162-2.
To assess the long-term impact of automatically generated Survivorship Care Plans (SCPs) on reported outcomes by ovarian and endometrial cancer patients
Pragmatic cluster randomized trial including 12 hospitals in the South Netherlands. Patients randomly received SCP care or usual care.
A total of 395 patients (221 endometrial and 174 ovarian) with a mean age of 63.3 and varying stages of disease participated in this study. All patients completed questionnaires directly after initial treatment and then at 6, 12, and 24 months.
All patients in the SCP group received an automatically generated SCP during their treatment plan consultation. The SCP consisted of a detailed treatment summary that included diagnostic tests, type of cancer, stage, grade and treatments received. It also included photos of the affected organs, as well as a detailed list of possible treatment effects, social and sexual side effects, possible signs of recurrence or secondary tumors, and resources for psychosocial support.
This study evaluated 3 primary outcomes: patient satisfaction concerning information provided, illness perceptions, and healthcare use.
The most significant finding of this study was that among ovarian cancer patients who received an SCP, there was less trust that their treatment would help or cure their disease when compared to patients who did not receive an SCP. Equally significant, in the endometrial group, those who received the SCPs unnecessarily had more concerns about symptoms and experienced a negative emotional impact when compared to patients who did not receive the SCP.
In the United States, Survivorship Care Plans are a response to the unique health needs of the 15.5 million US cancer survivors.1 The American College of Surgeon’s Commission on Cancer (CoC) has mandated that by 2019, cancer centers must provide an SCP to all survivors who have received curative intent treatment.2 According to the CoC mandate, an SCP must provide a treatment overview, describe recommended follow-up care, and provide information about lifestyle-based risk reduction. The SCP is meant to facilitate efficient continuity of care and to provide survivors with a resource to address treatment-related symptoms and risk reduction.
Despite the intent of the SCP mandate, the findings of this study are consistent with previous research demonstrating that SCPs can increase patient concerns and have a negative emotional impact.3 One reason for this is that the SCPs focus primarily on information about treatment and follow-up screening, but they rarely provide even cursory education when it comes to self-guided lifestyle-based strategies that can reduce risk and optimize health.4 In our experience, survivors report that a sole focus on a treatment summary and follow-up screening only serves to remind them of the challenges they experience as a result of their diagnosis and treatment and can incite fear about the possibility of recurrence.
The majority of SCPs presently being delivered to patients do not provide strategies for risk reduction and fail to engage survivors in lifestyle change. Thus, despite the fact that the SCP mandate originated with survivors, research has shown that it is failing to meet their needs for continuity of care and proactive risk reduction. Instead, the fulfillment of this mandate is adding to their distress.
In fact, previous research has demonstrated that patients receiving SCPs experience more symptoms, seek medical care more frequently, and have increased levels of emotional distress.5,6 These findings are consistent with other reviews that find SCPs alone provide no significant positive effect on survivor distress or satisfaction with care.7,8
As the provision of SCPs has become a part of the standard of care, it is important to modify their content such that tertiary prevention is included in order to engage patients in their ongoing healthcare. Addressing the distress experienced by cancer survivors with meaningful, proactive, and lifestyle-based risk reduction and health optimization strategies remains a critical need.
Conflict of Interest Disclosure
The authors of this study have a management and financial interest in the iTHRIVE Plan, an online wellness program for cancer survivors.