Reading time: 6 minutes
Being diagnosed with cancer is terrifying, and going through treatment is physically and emotionally challenging. So many patients are justifiably focused on “getting to the end” that they can be a little blindsided by survivorship. It’s not really a return to normal life, or the life one had before that cancer diagnosis. Rather, it’s a new phase that comes with its own challenges. Research on survivorship and its specific needs has expanded significantly over the past decade or so, but there are still gaps in both research and practice that affect the long-term health and quality of life for survivors.
What’s the scope of this problem? Currently in the US, there are about 17 million cancer survivors, with five-year-plus survivors accounting for nearly 70% of the total. This number is expected to rise to 26 million by 2040, an increase that reflects both advances in cancer treatment, and the overall aging of the American population.
The survivor population is diverse, encompassing every age and ethnic/cultural group in the US. Most cancer survivors contend with side effects from both the cancer and its treatment. Many are at greater risk of recurrence or a second primary cancer. Some research suggests that survivors may be at greater risk for cognitive impairment, perhaps due to the cancer itself, or to certain chemotherapy drugs, or to other treatment effects. About two-thirds of the survivor population is over 65, and their cancer impacts may be complicated by other chronic conditions, like hypertension or arthritis.
There are impacts on mental health, too. Studies show that cancer survivors are twice as likely to have serious psychological distress (SPD) compared to the general population. This in turn inhibits follow-up and preventive care, especially in individuals over 65. Many cancer survivors are trying to form and stick to new preventive habits–to quit smoking, reduce alcohol use, increase physical activity, improve their diet. These are challenging for all of us under the best of circumstances, but can be doubly so for survivors contending with other physical and mental health issues.
Finally, according to the CDC, one in four cancer patients struggle to recover the cost of treatment, and an even greater number are anxious about current and future costs.
As one might imagine, this suite of challenges takes a toll. Without consistent messaging from both cancer and primary care clinicians, and without actionable strategies and support, the survival phase can be every bit as daunting as cancer itself.
In 2006, the Institute of Medicine produced From Cancer Patient to Cancer Survivor: Lost in Transition. This foundational analysis advanced ten recommendations addressing the care gaps for cancer survivors. Flash forward 15 years and many of those recommendations have been acted upon:
- The body of research on survivors’ challenges has grown significantly.
- Survivorship care measures are now part of several important accreditation programs.
- The American Cancer Society and others have created survivorship care guidelines for primary care practitioners and patients.
- Nonprofit advocacy groups have developed tools and networks that help survivors with this phase of care.
But for survivors, this information feels kind of piecemeal and inconsistent. The multiplicity of survivorship guides can be confusing. Which one to follow? What if that guidance conflicts with current physician recommendations? Can’t we all be on the same page?
The cancer world knows these gaps remain. In 2019, the NCI reviewed progress since its 2006 report, and conducted workshops and webinars with practitioners and survivors to zero in on these deficits. They identified evidence gaps in:
Research: More work needs to be done to understand and address disparities among cancer survivors, to study longer-term survivors through longitudinal studies, to incorporate greater ethnic and cultural diversity into studies, and to research different cancer sites (nearly 50% of the research up to 2016 focused on breast cancer survivors).
Investigators also flagged the barrier between research findings and clinical implementation. Important evidence-based findings exist, but the leap to real-world intervention lags.
Clinical Practice and Guidelines: The overarching concern here is that quality measures in cancer survivorship care still have not been broadly adopted and implemented. To that end, researchers proposed a quality framework that highlights five overlapping aspects of cancer survivorship (internal blue circles in the graphic), and how they might be measured and monitored over time (bullet points linked to each blue circle).
The graphic illustrates how cancer survivor care overlaps with primary care, mental health, and overall disease prevention. With the rise in chronic health conditions in the US, and their associated costs, all parties are working to improve preventive care. One can view cancer survivorship through this chronic disease management lens.
This newer framework has gained some traction and is feeding into the development of some new protocols. Perhaps as important, it’s brought more attention to survivorship science, and has sparked discussion and further research.
Some feedback on the framework suggests that survivorship care should be addressed earlier–before and during treatment (particularly if it affects fertility). Survivors themselves agree, with studies showing their desire to prepare and plan as early as possible for life after that final treatment.
Certainly many believe that assessments of psychological and financial distress should also be pulled forward into the diagnosis and treatment stage, and be standard for all patients, rather than presented as an option if needed. No one tells a cancer patient, “Hey, you can go down the hall and get some blood work done if you feel like it.” Bloodwork is not optional; it’s critical to assessing patient well-being. Financial and psychological assessments should be, also.
There’s so much to be celebrated in the world of cancer research and treatment: new therapeutics are being developed at an astonishing pace, and more people are surviving cancer longer. The growing understanding of survivors’ needs–and the gaps in their care–is also good news. Practitioners, researchers, policymakers, and survivors broadly agree on what needs to happen. This just might be a good sign that it will.
Edited by Suchitra Mitra
Larissa Nekhlyudov, Michelle A Mollica, Paul B Jacobsen, Deborah K Mayer, Lawrence N Shulman, Ann M Geiger, Developing a Quality of Cancer Survivorship Care Framework: Implications for Clinical Care, Research, and Policy, JNCI: Journal of the National Cancer Institute, Volume 111, Issue 11, November 2019, Pages 1120–1130, https://doi.org/10.1093/jnci/djz089
Lisa Gallicchio, Ph.D., Emily Tonorezos, MD, MPH, Janet S. de Moor, Ph.D., MPH, Joanne Elena, Ph.D., Margaret Farrell, MPH, RD, Paige Green, Ph.D., MPH, FABMR, Sandra A. Mitchell, Ph.D., CRNP, Michelle A. Mollica, Ph.D., MPH, RN, OCN, Frank Perna, EdD, Ph.D., Nicole Gottlieb Saiontz, MHS, Li Zhu, Ph.D., Julia Rowland, Ph.D., and Deborah K. Mayer, Ph.D., RN, AOCN, FAAN, Evidence Gaps in Cancer Survivorship Care: A Report from the 2019 National Cancer Institute Cancer Survivorship Workshop JNCI: Journal of the National Cancer Institute, https://doi.org/10.1093/jnci/djab049
Mead KH, Raskin S, Willis A, Arem H, Murtaza S, Charney L, Pratt-Chapman M. Identifying patients’ priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care. J Cancer Surviv. 2020 Dec;14(6):939-958. doi: 10.1007/s11764-020-00905-8. Epub 2020 Jun 30. PMID: 32607715.
Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. https://doi.org/10.17226/11468
American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2019-2021. Atlanta: American Cancer Society; 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-treatment-and-survivorship-facts-and-figures/cancer-treatment-and-survivorship-facts-and-figures-2019-2021.pdf