In response to the needs of a growing population of cancer survivors, ASCO has released a position statement, recently published online in the Journal of Clinical Oncology. Developed through the work of the ASCO Cancer Survivorship Committee, the statement outlines a comprehensive agenda for achieving high-quality cancer survivorship care.
Improvements in early detection of first malignancies and the development of effective therapies have contributed to a dramatic increase in cancer survivors, who are at increased risk for long-term morbidity and premature mortality. These individuals’ cancer-related follow-up care needs extend beyond surveillance for cancer recurrence. As a result, the ASCO statement outlines a comprehensive approach to survivorship care that incorporates general health promotion, primary and secondary cancer prevention, and symptom management of common long-term and late effects.
According to Melissa Hudson, MD, Immediate Past-Chair of the Survivorship Committee and Director of the Cancer Survivorship Division at St. Jude Children’s Research Hospital, “ASCO’s goal is to develop tools and facilitate the development of infrastructure that will help its members determine how survivorship care can be optimally integrated within their current practice standards.”
Developing Clinical Guidance
A major area gap in survivorship care today is the availability of clinical guidelines on the long-term clinical management of survivors of adult-onset cancer. Limited research in adult-onset cancer late effects requires extrapolation from other populations to identify effective screening and treatment methods, said Smita Bhatia, MD, ASCO Cancer Survivorship Committee Member and Associate Director of Population Sciences at City of Hope Comprehensive Cancer Center. She added that the resulting consensus-based recommendations will be developed using a modified Delphi approach.
“It’s a bit more challenging to [develop guidance] within the context of the heterogeneity of adult-onset malignancies,” compared with the pediatric cancer patient population, said Dr. Hudson. “We should be drawing upon the expertise of leaders in the survivorship field to develop clinical consensus-based guidance to serve the needs of the current patients,” which, said Dr. Hudson, will also help identify important areas for research.
To address this need, ASCO has begun work on developing guidelines on the management of late- and long-term effects, through collaboration between the Cancer Survivorship and Clinical Practice Guidelines committees. The focus of these guidelines will be on common symptoms or clinical issues that reach across a diversity of cancer types. The first three guidelines—slated for completion this spring—will address fatigue, neuropathy, and depression.
Expanding Research Initiatives
To strengthen the foundation for such clinical guidelines, ASCO is also working to increase “the quality of evidence, the abundance of evidence, [and] the robustness of evidence in survivorship care,” according to Gregory Reaman, MD, member of ASCO’s Survivorship Committee and Associate Director in the FDA’s Office of Hematology and Oncology Products.
He noted that, as a first step toward identifying knowledge gaps, ASCO recently undertook a survey to develop an inventory of existing research initiatives and activities. Combined with a literature review and an assessment of survivorship research activities at cancer centers designated by the National Cancer Institute (NCI), the survey data will facilitate the prioritization of future research efforts.
Noting that economic constraints are an obstacle to the development of such studies, Dr. Reaman says that ASCO plans to advocate for the prioritization of existing resources for survivorship research initiatives. Most notably, in its statement ASCO encourages the NCI to incorporate survivorship-related data elements into the current redesign and reorganization of its clinical trial infrastructure, which will have “profound implications” for advancing survivorship research, according to Dr. Reaman.
Given the resource limitations, another goal articulated in the statement is to leverage innovative clinical research methods, such as the collection of self-reported data from study participants or the use of a uniform treatment summary, completed at the end of protocol therapy. Such approaches could limit the burden of “adding yet another layer on already stressed investigators and an already stressed infrastructure,” Dr. Reaman said.
Improving Care Coordination
Meanwhile, recognizing that optimal survivorship care will require a multidisciplinary care infrastructure, ASCO is also evaluating models of survivorship care and methods to optimize the transition of patients between oncology and primary care providers (PCPs).
“With the burgeoning number of cancer survivors and the burgeoning number of visits needed for acute therapy…we don’t have the space for oncologists to be following [all of] these patients for life,” said Kevin Oeffinger, MD, ASCO Cancer Survivorship Committee Chair-elect and Director of the Adult Long-term Follow-up Program at Memorial Sloan-Kettering Cancer Center.
ASCO’s statement advocates for a risk-stratified approach that maximizes limited resources “for patients [who] have truly unique or high-risk features and need the expertise and the care that can be delivered by a cancer center or by an oncology practice.” A patient with a low risk of cancer recurrence and a low risk of late effects who is psychosocially stable likely will receive adequate follow-up care from a PCP, through coordination with the patient’s oncologist. Even the high-risk patient needs to be followed by a PCP for non-cancer and non-cancer therapy needs, he added.
ASCO strongly supports the position that effective communication between the oncologist and the PCP is essential to ensure that the cancer survivor receives appropriate long-term follow-up care in the primary care setting based on the patient’s risk profile. This requires the oncologist to provide information—in the form of a treatment summary and care plan—that “demystifies the cancer experience.” He added that such information should be presented in an easy-to-read format that outlines the three to five key clinical issues to monitor in the patient. ASCO’s websites offers both oncologists and patients access to treatment summary and survivorship care plan templates to help provide a roadmap for managing care following active treatment.
Advocating for Policy Change
In an effort to encourage system-wide change during these fiscally uncertain times, ASCO advocates for leveraging existing legislation to support initiatives to improve cancer survivorship care quality, while ensuring that all patient have access to adequate and affordable coverage. This includes continued support of legislation aimed at comprehensive care coordination, such as provisions of the Affordable Care Act like accountable care organizations and medical homes; working within the framework of essential health benefits to define and advocate for services essential to cancer survivors; pushing for inclusion of survivorship in the development of national and state cancer control plans; and increasing policymaker awareness of cancer survivorship issues.
Mary McCabe, RN, MA, Director of Memorial Sloan-Kettering’s Cancer Survivorship Program and ASCO Cancer Survivorship Committee Chair, said, “Our goal in developing this survivorship agenda is to provide guidance that will assist the oncology community’s efforts to ensure that all cancer survivors receive coordinated care that includes the full range of services necessary to assure the highest quality of life possible.” ■
© 2013. American Society of Clinical Oncology. All Rights Reserved.