Approximately 75% of [childhood cancer survivors] have at least one chronic condition by the time they are 30 years out from diagnosis. The burden of morbidity is substantial. There is a need for long-term follow-up.
—Smita Bhatia, MD, MPH
Some years after successful treatment of a childhood cancer, a 16-year-old survivor required surgery to replace both hip joints, which were damaged from therapy containing steroids. An x-ray of the teenager’s destroyed joints is a stark reminder of the serious health challenges faced by cancer survivors for the rest of their lives.
“Cure comes at a cost,” said Smita Bhatia, MD, MPH, Director of the Institute for Cancer Outcomes and Survivorship at the University of Alabama Birmingham School of Medicine. Dr. Bhatia spoke about the teenager with osteonecrosis, as well as the range of other health issues faced by survivors and how health-care providers can best serve this population, in a June 3 webinar sponsored by the National Coalition for Cancer Survivorship (NCCS).
“Approximately 75% of [childhood cancer survivors] have at least one chronic condition by the time they are 30 years out from diagnosis, and 30% will have severe or life-threatening chronic conditions,” Dr. Bhatia said. “The burden of morbidity is substantial. There is a need for long-term follow-up.”
In 1971, there were 3 million cancer survivors in the United States, representing about 1.5% of the population, Dr. Bhatia noted. By 2014, there were 14.5 million survivors, about 4% of the population. At the current rate, the number of U.S. cancer survivors is expected to increase to almost 19 million by 2024.1
Slipping Through the Cracks
Survivors face not only the late effects of cancer treatment and the possibility of recurrence or second cancers, but also difficulties with insurance coverage and the coordination of health care between oncologists and primary care physicians, Dr. Bhatia said.
When cancer survivors transition to primary care, they often slip through the cracks, and needed care to prevent second cancers or other conditions is missed, Dr. Bhatia noted. Survivors often will have stacks of paper medical records but won’t clearly remember exactly what treatments they received. This information is important and can help prevent a primary care physician from ordering unnecessary or even harmful tests. It could also encourage a patient’s future health-care providers to be vigilant about preventing or catching problems early.
Survivorship Care Plans
The Commission on Cancer has mandated that by 2019, every patient with cancer who completes cancer treatment should receive a treatment summary. Nearly 10 years ago, the Institute of Medicine released the report “From Cancer Patient to Cancer Survivor: Lost in Transition,” calling for survivorship care plans for every patient completing cancer treatment.
To help oncology providers develop, implement, or expand their survivorship care programs, ASCO has issued a suite of care-planning resources, including a new treatment plan template and disease-specific survivorship care plan (SCP) templates. The SCP templates consist of a treatment summary and follow-up care plan. ASCO currently offers a generic SCP template as well as templates for breast, colorectal, prostate, small cell, and non–small cell lung cancers and diffuse large B-cell lymphoma.
The templates are part of ASCO’s Cancer Survivorship Compendium, an online repository of tools and resources to help oncologists implement or expand survivorship care programs. The SCP templates and the Compendium are available at asco.org/survivorship.
More cancer centers and oncology practices are likely to develop survivorship care programs in the coming years, Dr. Bhatia said.
For cancer survivors especially, it’s important to detect health problems early, but often, insurance companies block preventive tests, Dr. Bhatia said. “We spend a large amount of time arguing with insurance companies on this,” she said. “We need to educate our insurance companies. They are being penny wise and pound foolish in not allowing coverage for these tests. We are saving them many thousands of dollars by detecting and preventing these complications early.”
The NCCS is advocating support for legislation that would establish a new Medicare service for cancer care planning. Congresswoman Lois Capps (D-CA24) and Congressman Charles Boustany (R-LA3) intend to introduce the Planning Actively for Cancer Treatment (PACT) Act in the near future, said NCCS Chief Executive Officer Shelley Fuld Nasso.
The proposed planning service could be provided to patients at the time of cancer diagnosis, at the end of active treatment, at the beginning of long-term survivorship, and when there is a significant change in treatment, according to an NCCS statement. The PACT Act would encourage health-care providers to create a survivorship care plan, including a treatment summary and information about monitoring and follow-up post treatment.
The NCCS webinar, “Strategies for Designing a System for Survivorship Care,” including Dr. Bhatia’s slides, may be viewed on the NCCS website at http://www.canceradvocacy.org/about-us/events/strategies-for-designing-survivorship-care-system-webinar/.
The event was part of a new NCCS program titled, “Cancer Policy Advocate Training (CPAT),” designed to prepare advocates to be fully engaged in cancer care policy initiatives. NCCS held in-person training in Washington DC, June 25–26, to address the needs of survivors from diagnosis through treatment and long-term survivorship care. ■
Disclosure: Dr. Bhatia reported no potential conflicts of interest.
1. American Cancer Society: Cancer Treatment and Survivorship Facts and Figures 2014-2015. Available at http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf. Accessed July 2, 2015.