In 2005, the Institute of Medicine (IOM) published the report From Cancer Patient to Cancer Survivor: Lost in Transition that recognized survivorship as a distinct phase of the cancer care trajectory, beginning with diagnosis and extending beyond active cancer treatment through follow-up and long-term survival.1 The report defined optimal care after cancer treatment and offered models and strategies for meeting the long-term needs of survivors. With a growing number of cancer survivors and recognition of patients’ post-treatment needs, survivorship programs have flourished over the past 5 years in the United States and abroad. Programs vary depending on settings, resources, and needs of targeted populations.
Memorial Sloan-Kettering Cancer Center (MSKCC) implemented a comprehensive program for survivors of adult-onset cancers in 2005, in which nurse practitioners (NPs) provide disease- and treatment-specific care and counseling to survivors with a focus on assisting optimal recovery and transition to wellness. Aligned with the institutional quality-care initiatives, this program was de signed to address an urgent organizational need for moving post-treatment patients to the most appropriate care providers, allowing for greater access for new patients needing acute cancer treatment. This article provides an overview of cancer survivorship care components and delivery models, using MSKCC’s experience in meeting patient and institutional needs.
Components of survivorship care The essential components of survivorship care include the prevention and early detection of new and recurrent cancer; surveillance of cancer spread, recurrence, or second cancers; interventions for physical and psychosocial sequelae of cancer and treatment; and coordination of ongoing healthcare between oncology and primary care providers.1 All patients need survivorship care with variations in need for services based on the complexity of cancer treatment, preexisting comorbidities, and the age at which treatment was delivered. For example, those receiving multimodality cancer treatment or intensive treatments, such as bone marrow transplantation, may require more long-term specialty services than adults treated with surgery alone.2 Survivorship care should begin at the end of active cancer treatment. A plan of care should be based on the treatment delivered and the presence of lingering effects and potential for late effects, with recommendations for reducing risk and promoting healthy behaviors.3
Surveillance for cancer recurrence includes careful review of interval history, physical examination, and appropriate diagnostic testing, which begin at treatment end and extend for a period of time that is dependent on the type of cancer, stage at diagnosis, tumor characteristics, and related risk of recurrence. Follow-up visits and testing schedules tend to be frequent during the immediate post-treatment period and decrease in frequency over time as the risk of recurrence diminishes. The National Comprehensive Cancer Network and the American Society of Clinical Oncology (ASCO) as well as other organizations have developed consensus-based followup guidelines to assist with a standard approach. As with all survivorship care, surveillance for recurrence may be provided by the oncology specialist, primary care provider, or a combination of both.4
Monitoring for and management of disease and treatment effects, including second cancers, is essential for the longterm health and quality of life of survivors. Monitoring requires knowledge of particular treatment effects and related assessments and testing. There are few published guidelines for monitoring of late effects. Examples of monitoring include periodic cardiovascular evaluation for patients treated with anthracyclines, breast cancer screening with annual mammography for Hodgkin lymphoma survivors treated with mantle radiation, screening those treated with neck radiation for hypothyroidism, assessing restoration of ovulation after alkylating or hormonal agents, and screening for anxiety and depression.1
Interventions for managing long-term and late treatment effects are important for the recovery, adaptation, and enhanced quality of life of the survivor. Examples include exploring causes for persistent fatigue after lymphoma, referral to specialists for patients with urinary incontinence and sexual dysfunction after radical prostatectomy, and initiating lymphedema therapy after lymph node dissection.
Routine screening for breast, colorectal, cervical, and endometrial cancers according to national guidelines should be included as part of ongoing healthcare recommendations. Promotion of positive health behaviors includes counseling survivors about lifestyle changes that can reduce comorbid conditions, which may be related to age, treatment, genetic susceptibility or behaviors. Recommendations should include known risk-reduction behaviors, such as smoking cessation, weight control, moderation of alcohol intake, control of sun exposure, regular physical activity, and vaccinations.1
Summary of cancer treatment and plan for follow-up care According to Earle, quality survivor care is rooted in a plan for survivorship.5 The second recommendation of the IOM report calls for provision of a comprehensive care summary and a follow-up care plan that is clearly and effectively explained for all patients completing primary treatment.1 A survivorship care plan provides patients and their current and future care providers with a source of information about the treatment they received and the related risks and recommendations. It can serve as a tool for counseling survivors about the lifetime significance of cancer treatment and their health maintenance. There are barriers to providing these plans, such as time required and lack of reimbursement for completion, poor access to information over time because of multiple care providers and settings and lack of electronic records, and absence of evidence and consensus-based guidelines for follow-up care.3,6 In addition, no evaluation data support the usefulness of care plans. Although the IOM report concluded that as an element of care they “simply made sense” and that they had strong face validity, the report acknowledged that research was needed to assess the impact and associated costs of care plans and their acceptance by patients and providers.1
ASCO has created sample templates for the prospective recording of treatment as well as a one-page summary care plan containing follow-up recommendations for breast and colorectal cancers; expansion to include other cancer types is under way. There is also a generic template for use with any type of cancer. All the templates are available on the ASCO website.3,6 Other groups have developed care plan templates and made them available as resources. The LIVESTRONG Care Plan was developed by the Lance Armstrong Foundation in a partnership with the OncoLink webpage of the University of Pennsylvania. Journey Forward, created by a collaboration between the National Coalition for Cancer Survivorship, UCLA Cancer Survivorship Center, WellPoint, and Genentech, is a simple treatment summary format and guidelines for monitoring future care based on the ASCO treatment guidelines. Passport for Care, developed by a group from the Texas’ Children’s Cancer Center and Baylor College of Medicine, is an Internet-based care plan based on Children’s Oncology Group guidelines for the care of pediatric cancer survivors. Clinical application of Passport for Care is currently being evaluated.6
Models of care The usual care of cancer survivors includes follow-up care with the treating oncologist who provides surveillance for cancer recurrence and assessment of persistent treatment effects.4 There is generally little time in a busy oncology practice to focus on a comprehensive plan of care, and communication with other providers is limited. At the same time, primary care physicians have a significant role with nearly half of cancer-related ambulatory visits characterized as shared care with oncologists, although the role of each clinician during these visits is unclear.1 Barriers to providing optimal survivorship care include lack of professional education and training of primary care providers, limited standards or guidelines for care, and difficulties in communication. Overcoming these barriers requires building an integrated systems approach that incorporates a team of primary care, oncology, and other care providers who agree to communicate and develop streamlined transitions in care.1 Promising models of survivorship care have emerged, including a shared-care model and various forms of specialized follow-up clinics.
Shared care is described as a sharing of responsibility for healthcare between two or more clinicians of different specialties, where there is transfer of information about a patient and knowledge about the particular care requirements.1,4 Shared care has become the standard approach to managing chronic illnesses, such as diabetes, where care is coordinated between an endocrinologist and a primary care physician. Shared care in the oncology setting can be an effective model for coordinating care during the transition from acute treatment to survivorship. As patients reach recovery from cancer treatment, it becomes vitally important that they resume their other healthcare maintenance and management of comorbidities.
Specialty survivorship programs are evolving in academic institutions. Initial models were developed for the care of pediatric cancer survivors, where there was early recognition of the need to monitor for late treatment effects. Most of these programs are directed by a pediatric oncologist and coordinated by an NP, and about half include other mental health providers and other specialties.4 Disease-specific models were the first example of adult survivorship care programs. Oeffinger and McCabe described three distinct adult care models.4 As in the pediatric programs, NPs play a central role in care delivery. Their first care model is the most basic and is described as a one-time consultative visit to a survivorship care provider, often an NP. A summary of cancer treatment and a plan for monitoring late effects are developed, and needs-based counseling and health promotion recommendations are provided. Their second care model is an NP-led clinic that functions as an extension of the care continuum. The NP delivers ongoing care that includes a standard set of survivorship services and a follow-up care plan. Contact with the primary care provider is reestablished by the NP, with sharing of patient information and care guidelines. This facilitates shared care and a potential return to community follow-up care based on the patient’s risk for recurrence and late effects. Their most complex care model is a specialized multidisciplinary survivor program similar to the pediatric programs. This model includes physicians with training and experience in the care of cancer survivors, NPs, and other mental health and consulting specialists. The team provides risk-based care. One example of this resource-intense model is the clinic that provides care for the adult survivors of pediatric cancers.
Survivorship model of care at MSKCC: adult-onset cancer clinics The clinical survivorship program for adult-onset cancers at MSKCC began in 2005. A pediatric long-term follow-up clinic had long been established and served as a resource for development of the adult program. Led by Mary McCabe, director of the Cancer Survivorship Initiative, a multidisciplinary steering committee developed a model of care to best meet the defined needs of adult patients and the institution. An institutional needs assessment and patient focus groups guided development and expansion of support programs and greater access to services for survivors and families. The overall goals of the clinical program are to extend the continuum of care by defining survivorship care for each disease specialty and to transition patients along the continuum from the oncology provider to the survivorship NP, who facilitates communication with the primary care provider (Figure). The program is designed to provide comprehensive follow- up care with a standard set of services that addresses survivors’ specific medical, psychosocial, functional, educational, and spiritual needs. Patient eligibility for transfer to survivorship care and standard follow-up guidelines are determined by the disease management team for that patient population.
NPs were selected as the survivorship care providers based on their educational preparation in holistic care and the hospital’s positive experience with NPs in acute care over many years. The survivorship NPs receive intensive training in survivorship care and the particular needs of the patient population. They practice in the clinical areas assigned to the disease management teams, reinforcing the notion to both referring physicians and patients that the survivorship NP is an extension of overall cancer care. At the independent NP visit, the essential components of survivorship care, as outlined in the Table, are discussed. The NP prepares and reviews a survivorship care plan with the patient and provides the patient with a copy. A copy is also sent to the patient’s primary care provider along with the current visit note identifying any concerns and clarifying the NP’s role as a pro vider. Each time the patient is seen, a copy of the visit note is sent to the primary provider. Routine interdisciplinary referrals are made to both institutional and external resources, which may include nutritionists, wound and ostomy nurses, sexual health clinicians, fertility specialists, clinical geneticists, rehabilitation medicine services, dermatologists, integrative medicine programs, mental health workers, smoking cessation counselors, and cancer screening programs.
Each survivorship clinic began as a pilot program with simple metrics of feasibility, sustainability, and satisfaction identified for evaluation. Ongoing monitoring includes physician transfer of eligible patients, patient agreement to move to a new NP provider and reschedule follow-up appointments, and administrative support with space and other resources. Each pilot program was evaluated at the end of 1 year, and a determination made about its success prior to making it a permanent part of hospital operations. To date, there are eight NPs delivering disease-specific survivorship care to the following cancer populations: breast (three NPs), colorectal, thoracic, urology, bone marrow transplant, and radiation oncology (prostate). In 2009, the NPs collectively saw more than 6000 survivors and had a greater than 90% average rescheduling rate, significant measures of referring physician and patient satisfaction.
A case study of a colorectal cancer survivor in the MSKCC program further demonstrates the role of the survivorship NP (sidebar).
Summary The survivorship program at MSKCC is committed to the expansion of survivorship research and education as well as clinical care. The survivorship clinics have served as platforms for clinical research as each patient visit creates data on posttreatment outcomes. A growth in the center’s survivorship research community, with increased funding and individual studies, has been an additional outcome of the program. In addition, educational initiatives regarding survivorship care and late treatment effects have been expanded for patients and families, MSKCC clinicians, and community providers. A webpage, called Living Beyond Cancer (www.mskcc.org/mskcc/html/58022.cfm) provides resources for patients and professionals. MSKCC has benefited from funding and collaboration with the Lance Armstrong Foundation and is designated as a LIVESTRONG Center of Excellence. This funding has, in particular, supported an investment in various New York City community cancer survivorship programs for the underserved.
Care of cancer survivors has advanced in recent years, largely in response to demands of patient advocates in pursuit of a better quality of life after cancer treatment. The growing need to address patient concerns as well as the sheer number of survivors in the healthcare system has created an opportunity for development of creative care-delivery strategies. The MSKCC program has standardized follow-up care for populations of cancer survivors to address patient needs systematically. The use of specially trained advanced practice nurses as providers has maximized the institution’s dual goals of improving quality of care and providing more efficient, yet comprehensive services. The NP-led clinics have demonstrated that instituting a formal survivorship plan of care and using the unique skills of NPs can be an effective means of helping patients to achieve maximal recovery with the necessary tools for long-term survival.
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