Oct 28, 2014
A multifaceted approach seeks to ensure survivors continue to receive the highest quality care following treatment
By Virginia Anderson, Senior Writer
Thanks to decades of productive clinical research, the development of highly effective therapeutic options, and improved screening and prevention methods—as well as the skills and dedication of oncology professionals— more people than ever are surviving their cancer diagnosis. According to the National Cancer Institute’s (NCI) Office of Cancer Survivorship, as of January 2014, it is estimated that there are 14.5 million cancer survivors in the United States, which represents over 4% of the population. The number of cancer survivors is projected to increase by 31% (to almost 19 million) by 2024, which represents an increase of more than four million survivors in 10 years.1
These individuals are not just surviving, but are living longer lives following the completion of their treatment. Sixty-four percent of survivors have survived at least five years after diagnosis, 41% have survived at least 10 years, and 15% have survived 20 years or longer.1 During this time, cancer survivors require long-term surveillance, risk assessment, and prevention services, as many face distinct and serious health care issues related to the cancer itself, pre-existing comorbidities, and the exposure to therapy. Delivering high-quality survivorship care is essential to their long-term health.
Although ASCO has always been cognizant of and committed to survivorship issues, this commitment was formalized with the creation of the Cancer Survivorship Committee in 2011. In recognition of the complexities of cancer survivorship care, the Committee has pursued a multifaceted approach to ensuring that cancer survivors continue to receive the highest quality individualized risk-based care following the conclusion of active cancer treatment. The ultimate goal is simple: that no person should ever feel abandoned in their transition from patient with cancer to cancer survivor.
Education for oncology professionals is a cornerstone of ASCO’s mission and is a critical part of its initiatives concerning cancer survivorship. At this time, efforts are heavily focused on three areas: clinical guidance for physicians, a comprehensive compendium of survivorship care information to supplement gaps in training, and the incorporation of survivorship issues into meetings and symposia.
Clinical Practice Guidelines
The transition from active treatment to post-treatment care is critical to optimal long-term health. To assist with the long-term care of survivors, ASCO has developed a set of evidencebased clinical practice guidelines to help health care providers care for survivors of adult-onset cancers. Three survivorship-related guidelines have been published in 2014, with more in development. The existing guidelines are valuable across oncology specialties as they address common symptoms, rather than specific diseases.
Visit asco.org/guidelines/survivorship to find complete guidelines, summaries, slide presentations, clinical tools, and patient information on the following:
- Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers
- Screening, Assessment, and Management of Fatigue in Adult Survivors of Cancer (adapted)
- Screening, Assessment, and Care of Anxiety and Depressive Symptoms in Adults with Cancer (adapted)
Cancer Survivorship Compendium
ASCO’s Cancer Survivorship Compendium (asco.org/survivorship) is a comprehensive online repository of tools and resources to enable oncology providers to implement or improve survivorship care within their practices. Although ASCO endorses the National Coalition for Cancer Survivorship definition of a cancer survivor as starting at the point of diagnosis, the focus of the information and resources offered throughout this compendium is on those individuals who have completed treatment.
“The Cancer Survivorship Compendium is a collection, in one convenient place, of current knowledge about starting, running, and improving a survivorship care program,” said Charles L. Shapiro, MD, of Mount Sinai Hospital and Chair of the Cancer Survivorship Committee. “As survivorship care becomes an established part of cancer care and most patients become long-term survivors, this is a wonderful resource.”
Providing High Quality SurvivorshipCare in Practice: An ASCO Guide is available online as a free printable download. The publication, created in spring 2013, outlines the essential elements of a high-quality survivorship care program and is an excellent place for health care professionals to start furthering their education on cancer survivorship. It discusses advantages and disadvantages of the various models of care, followed by a set of questions to help practices determine which models of care will be most effective for their situation; the provider-, patient-, and system-level challenges of implementing a survivorship program, with possible solutions; a checklist to assist in the proper transition of care from an oncologist to another medical professional and ensure coordination of care; and information on measuring and improving the quality of the practice’s survivorship program.
In addition to ASCO’s clinical practice guidelines, the compendium provides links to guidance published by other organizations, offering a convenient point of entry for survivorship care recommendations and best practices. A section on “Care for Special Populations” provides specific information on survivorship concerns for pediatric, adolescent and young adult, and older survivors. Resources on tobacco cessation and energy balance are provided in the interest of promoting overall wellness among cancer survivors by improving their long-term health and outcomes.
Because survivorship care frequently requires a diverse team of medical specialists, the Cancer Survivorship Compendium offers resources related to complementary/alternative medicine, rehabilitation services, psychosocial support, palliative care, and fertility.
The compendium also provides information on coding and reimbursement for treatment planning and coordinating care, monitoring and managing late effects of cancer or cancer treatment, and providing health education and counseling to cancer survivors.
Because there are no widely held standards for how cancer survivorship issues should be taught during medical and oncology training, ASCO offers resources through the compendium to help fill knowledge gaps. Links to ASCO University® courses and Virtual Meeting presentations on survivorship are available for oncology professionals who wish to expand their knowledge further. A list of Continuing Medical Education/Continuing Education opportunities related to survivorship, in-person conferences, and online educational series focused specifically on cancer survivorship are also available in the compendium.
The ASCO Annual Meeting features a dedicated Patient & Survivor Care track to ensure that the latest research and education on survivorship is available to Meeting attendees and as an enduring resource in Virtual Meeting. An upcoming white paper authored by members of the Cancer Survivorship Committee will guide ASCO’s educational efforts related to survivorship and outline a core curriculum of knowledge for cancer professionals in the areas of late effects, risk of recurrence, and long-term management of symptoms and psychosocial issues faced by cancer survivors.
Survivor and caregiver education
ASCO offers comprehensive resources for survivors, family members, and caregivers about the transition to cancer survivorship on its patientinformation website, Cancer.Net (cancer.net/survivorship). The Society’s patient-information resources are supported by the Conquer Cancer Foundation of ASCO.
CancerSurvivorship, part of the ASCO Answers series of materials, is a detailed booklet that covers crucial topics for cancer survivors: appropriate follow-up medical care and possible late effects and recurrence risks; psychosocial and interpersonal issues, including fear and anxiety and navigating family relationships; practical issues such returning to work and handling finances; support resources; and information about volunteering and advocacy for cancer-related causes. The booklet is available as a free printable download on Cancer.Net, or professionally printed copies can be ordered for your office from the ASCO University® Bookstore. Throughout the booklet, readers will find questions to ask their health care team and places to take notes on discussions and referrals, making it a valuable resource to guide physician-patient communication about survivorship.
Patients can find detailed information on specific aspects of survivorship on Cancer.Net, including:
- Treatment plans and summaries that the survivor can print, discuss, and complete with their physician
- Information on fertility and pregnancy following cancer treatment
- The relationship between post-traumatic stress disorder and cancer
- Specific information on late effects and long-term health issues according to treatment
Many cancer survivors express an interest in using their cancer experience to support other patients or create a positive change in cancer care/ research through fundraising and advocacy. Cancer.Net offers numerous suggestions for survivors to make a difference.
Providing survivorship care requires a variety of approaches to meet the needs of this growing population, and several models of care delivery exist, all with distinct advantages and disadvantages. ASCO’s Cancer Survivorship Compendium places a strong emphasis on the many potential models for long-term survivor care that may be implemented by a practice. Although adequate care can be provided by the oncology specialist in some cases, ASCO promotes sharedcare models that draw on the skills and knowledge of a multidisciplinary and multispecialty team, whether within a survivorship clinic setting or with coordinated care among different practices.
“ASCO favors a shared model of care that integrates oncologists and primary care physicians because survivorship care is truly a two-way street. Primary care physicians are better able to provide the screenings and routine health services that survivors require, and oncologists are able to provide guidance on late effects resulting from the patient’s disease, treatment, or both. Good communication between our specialties is crucial,” Dr. Shapiro said.
Regardless of the model of care implemented, oncology professionals can expect to work closely with other medical specialists to provide optimum care for most cancer survivors. ASCO’s Cancer Survivorship Committee is engaged with other professional organizations (supporting primary care physicians and cardiologists, in particular), with the goal of developing collaborative educational opportunities that bridge multiple specialties with a stake in cancer survivorship. Furthermore, as 60% of cancer survivors are age 65 or older,1 education in geriatric medicine or referral to a geriatrician will be helpful in caring for these survivors.
ASCO believes that all cancer survivors benefit from a survivorship care plan, consisting of a treatment summary and follow-up care plan, to assist in coordination of care. Based on feedback from ASCO members, the survivorship care plan template has been revised and streamlined. The new version, which was released in October 2014, focuses more on critical information, is easier for physicians and patients to use, and requires less time to complete. The templates were published in the Journal of Oncology Practice as part of an ASCO statement on the importance of and minimum components for survivorship care plans, and are available online as part of ASCO’s Cancer Survivorship Compendium.
“The goal of the survivorship care plan is to get the right information to the right people at the right time. This is less a document and more a process that enables meaningful communication between the cancer specialist, the survivor, and their other care providers,” said Kevin C. Oeffinger, MD, of Memorial Sloan Kettering Cancer Center and Immediate Past Chair of the Cancer Survivorship Committee.
Assessing current research efforts related to survivor issues is an ongoing initiative for the Cancer Survivorship Committee. The Committee recently completed a survey of ASCO members and cancer centers to determine where survivorship research is being conducted, what questions are being evaluated, and how the trials are being funded. The data are currently undergoing analysis. ASCO hopes to draw conclusions, based on the survey, on research gaps and priorities for future research directions. ASCO’s Cancer Survivorship Compendium features a section of resources related to cancer survivorship research.
Exciting advances are likely to come from the field of genomics and molecular medicine, which is influencing the landscape of survivorship care as well as diagnosis and treatment. “We can imagine that there might be molecular markers for the risk of developing a second cancer or a cardiac issue, and there is an explosion of research in this field. The work is early, but the hope is that this research will allow us to better understand what therapies will be best for patients in the long run. What will be the best therapy not just for a five-year survival, but for a 25-year survival?” Dr. Oeffinger said.
There is a global interest in survivorship as the number of survivors increases and the understanding of the value of appropriate survivor care grows—value in terms of both positive patient outcomes and responsible use of health care resources. Promising survivorship research is taking place around the world, Dr. Oeffinger noted, and pointed to international efforts to harmonize recommendations for survivor care that could be implemented across care models and resource settings.
A critical challenge in the provision of high-quality care for cancer survivors is lack of adequate reimbursement and fragmented coverage. Currently, there are no established billing codes categorized specifically for survivorship care. Follow-up visits are routinely covered by payers, but not all survivorship providers can bill in all states. Oncologists may be able to bill for the total time spent examining and/or counseling the patient. Further, though regulations vary by state, services delivered by advanced practice providers may also be reportable and reimbursable.
A particularly challenging gap is that reimbursement is currently not available for the completion of a survivorship care plan (composed of the treatment summary and long-term care plan). Because these plans are essential to coordination of care, ASCO and other organizations are actively supporting legislation to enable providers to bill for this service.
ASCO is also involved in an assessment of survivorship provisions in the Affordable Care Act, which does not include specific measures for coverage of preventive services and other benefits for cancer survivors. The Society continues to be an advocate for appropriate coverage of all benefits to which cancer survivors should be entitled to ensure their long-term wellness.