Are Cancer Survivorship Care Plans Doing More Harm Than Good?

Study finds Survivorship Care Plans are associated with negative emotional impact

By Matt Mumber, MD, Lise Alschuler, ND, FABNO, and Karolyn A. Gazella

Reference

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.

Objective

To assess the long-term impact of automatically generated Survivorship Care Plans (SCPs) on reported outcomes by ovarian and endometrial cancer patients

Design

Pragmatic cluster randomized trial including 12 hospitals in the South Netherlands. Patients randomly received SCP care or usual care.

Participants

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.

Outcome Measurements

This study evaluated 3 primary outcomes: patient satisfaction concerning information provided, illness perceptions, and healthcare use.

Key Findings

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.

Practice Implications

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. 

About the Authors

Matt Mumber, MD, is a board certified radiation oncologist with the Harbin Clinic in Rome, Georgia. He received his medical doctorate from the University of Virginia and he also did a fellowship in integrative medicine with the University of Arizona. He is the coauthor of the book Sustainable Wellness and the editor of the textbook Integrative Oncology: Principles and Practice. Mumber is the director of medical affairs of the iTHRIVE Plan.

Lise Alschuler, ND, FABNO, is a naturopathic physician with board certification in naturopathic oncology. She maintains a part-time naturopathic oncology practice with Naturopathic Specialists in Scottsdale, Arizona. Her undergraduate degree in medical anthropology is from Brown University and her naturopathic doctorate is from Bastyr University. She is the coauthor of The Definitive Guide to Cancer and The Definitive Guide to Thriving After Cancer. Alschuler is the chief medical officer of the iTHRIVE Plan.

Karolyn A. Gazella has been writing and publishing integrative health information since 1992. She is the publisher of the Natural Medicine Journal and the author or coauthor of hundreds of articles and several booklets and books including her latest book The Definitive Guide to Thriving After Cancer that she wrote with Lise Alschuler, ND, FABNO. Gazella is the co-creator and Chief Executive Officer of the iTHRIVE Plan, an innovative online wellness program specifically for cancer survivors.

References

  1. American Cancer Society. Cancer Treatment and Survivorship Facts & Figures 2016-2017. Atlanta, GA: American Cancer Society; 2016.
  2. Deline M. The CoC clarifies the survivorship care plan standard: What you need to know. Oncology Rounds. Advisory Board Web site: https://www.advisory.com/research/oncology-roundtable/oncology-rounds/2014/09/the-coc-clarifies-the-survivorship-care-plan-standard-what-you-need-to-know. Published April 25, 2016. Accessed October 27, 2016.
  3. Nicolaije KA, Ezendam NP, Vos MC, et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol. 2015;33(31):3550-3559.
  4. Alschuler L, Mumber M, Gazella KA. Lifestyle interventions enhance quality of life and reduce recurrence risk among cancer survivors. Natural Medicine Journal. 2016;8(11).
  5. Nicolaije KA, Ezendam NP, Vos MC, et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial, J Clin. Oncol. 2015;33(31):3550–3559.
  6. Grunfeld E, Julian JA, Pond G, et al. Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol. 2011;29(36):4755-62.
  7. Brennan ME, Gormally JF, Butow P, et al. Survivorship care plans in cancer: a systemic review of care plan outcomes. Br J Cancer. 2014;111(10):1899-908.
  8. Boekhout AH, Maunsell E, Pond GR, et al. A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial. J Cancer Surviv. 2015;9(4):683-91.