With a truly national survivorship infrastructure, as the fear of cancer begins to fade, so too will the burdens faced by survivors.— (Left) Janet Snapp, MSN, RN, FPCN, and Dori Klemanski, DNP, CNP, RN
Although a cure for cancer remains elusive, there are many promising ideas to eradicate this disease, including the Cancer Moonshot Initiative and an ever-increasing body of cancer research that continually drives innovative treatments in an effort to improve survival and, ultimately, find a cure. And while advances in cancer treatment are resulting in an increase in cancer survivorship—currently there are 15.5 million cancer survivors in the United States1—these survivors need support after a cancer diagnosis, as do the many caregivers and/or family members who are also affected by a loved one’s cancer diagnosis and treatment.
National Movement for Survivorship
The potential for ongoing physical, psychological, social, and economic effects from cancer and its treatment was recognized on a national level over 20 years ago when the National Cancer Institute (NCI) launched the Office of Cancer Survivorship. In 2005, the Institute of Medicine detailed the shortfalls in the care cancer survivors receive in its landmark report, From Cancer Patient to Cancer Survivor: Lost in Transition.2
Since the report’s release, the American College of Surgeons Commission on Cancer has established hospital accreditation criteria to ensure that patients have access to a range of diagnostic, treatment, and supportive services to improve patient outcomes and survivors’ quality of life after treatment. The Commission on Cancer accreditation requirements, including the development of treatment summaries, survivorship care plans with information for primary care physicians about potential late effects of treatment, and a distress screening thermometer to address psychosocial issues, have driven significant changes in the care of cancer survivors.
However, more needs to be done on a national level to ensure lifelong support of the needs of cancer survivors. Areas for improvement include affordable access to wellness programs for stress reduction, weight management, nutritional support, and physical activity; equitable access to primary care providers and insurance coverage of cancer screening tests for the prevention of secondary cancers; workplace protections for conditions that linger past completion of cancer treatment, such as cognitive impairment or cancer-related fatigue; and destigmatization of mental health issues and insurance parity for mental health–care services.
Many of these ideas—particularly those that are not traditionally identified within a physician-driven care model—are rarely covered by insurance but are highly valued by survivors. For example, ongoing visible signs of cancer, such as a disability caused by surgeries that result in amputations or permanent tracheostomy, difficulty walking from peripheral neuropathy after chemotherapy, or changes in appearance like hair loss, can interfere with personal and professional relationships and cause long-term distress.
Other challenges, such as debilitating fatigue, fear of recurrence, spirituality concerns, depression, and even suicidal thoughts may be more difficult for survivors’ family, friends, or coworkers to see or acknowledge. As such, financial support for programs that provide care coordination and education regarding the importance of follow-up care is also something that should be addressed nationally.
The physical, emotional, and financial needs of caregivers are also often overlooked, even though they may have been in crisis since a loved one’s initial diagnosis. Frequently, caregivers are providing support over years—not just a few weeks or months—as cancer survivors live longer. They require support for their health and well-being to manage this task long term. Caregivers need screening for distress, but the ability to pay for interventions and the time needed to partake in their own personal care may feel indulgent when supporting a person struggling with cancer.
Survivorship Care: Not a Luxury
Cancer survivorship care is not recognized as a reimbursable event by the Centers for Medicare & Medicaid Services, and insurance companies often do not pay for survivorship care services such as wellness counseling or integrative therapies and may even impose a financial limit for mental health–care services. Most institutions fold survivorship care into a brief office visit with a medical provider to comply with the letter of the requirement, but it is not enough to meet the spirit of the requirement.
It is hard to imagine an insurance company paying for art therapy, nutritional advice, or dance lessons, but that is exactly the type of therapy some survivors need. For too long, survivorship care has remained unknown or unsupported, and disrupting that status quo will require a national effort involving changes in both survivorship care policy and practice.
With the need so great, the oncology community must deliver consistent, effective survivorship care so patients and their families have the resources to continue healing long after the cancer is gone. Survivorship care is now an established medical field, but it’s far from a universally adopted discipline and is often confused with the sole provision of a cancer treatment summary and survivorship care plan upon treatment completion rather than the holistic and comprehensive model of care designed to provide long-term support.
At our institution, each patient has access to an interdisciplinary support team of experts, including medical oncologists, physical therapists, chaplains, and nutritionists, among others. During the past fiscal year, the JamesCare Survivorship Clinic accommodated over 4,000 survivor visits and provided about 20% of eligible patients with a treatment summary and survivorship care plan. Patient attendance at programs and workshops, such as our Ask the Expert series and Yoga for Cancer Survivors, reached over 2,500. We also have 15 support groups for specific cancers, a support group for adolescents and young adults, and a book club.
Our survivorship program builds on ongoing research conducted with our patients. For example, one large study investigating the impact of yoga on cancer survivors found it improved mood and boosted energy.3 Although that research received generous support from the NCI, traditional funding sources such as Medicare, Medicaid, and private health insurance reject payment for these services, considering their value unproven and setting up a difficult catch-22 situation.
During the past 7 years, The Ohio State University Comprehensive Cancer Center has partially bridged that funding gap with more than $106 million raised from the Pelotonia cycling fundraiser, a 2-day event founded in 2008 with the intent of raising money to fund cancer research at The Ohio State University. One recent project supported by Pelotonia evaluated the effect of Argentine tango practice on the biomechanical predictors of fall risk among cancer survivors. The study showed that the intervention dramatically improved balance in survivors with postchemotherapy neuropathy and increased their confidence and mood.
The tango study was the brainchild of a premed/dance student who partnered with a neurorehabilitation specialist and researcher. Such cross-pollination of ideas is not uncommon at a large university with a multidisciplinary community of cancer survivorship experts and the resources necessary to bring comprehensive survivorship programs to life.
Many regional community hospitals, rural clinics, and individual providers have constraints to providing long-term survivorship care due to limited referral networks and psychosocial resources. Disparity in access to such care could be addressed in several ways, including working with institutional consortiums or developing partnerships with state health departments through their cancer control plans, as well as using technologic innovation such as telemedicine, adopting peer-mentoring programs, leveraging the resources of national advocacy groups like the American Cancer Society or Livestrong, and increasing collaboration among primary care physicians to provide comprehensive holistic care.
With a truly national survivorship infrastructure, as the fear of cancer begins to fade, so too will the burdens faced by survivors. ■
Disclosure: Ms. Snapp and Ms. Klemanski reported no potential conflicts of interest.
2. National Academies of Sciences, Engineering, Medicine: From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC; National Academies Press; 2006. Available at www.nationalacademies.org. Accessed November 21, 2016.