Cancer center survivor follow-up and surveillance.

CS20-02

Due to the recent advances in cancer diagnosis and treatment, the number of cancer survivors in the United States (US) has grown from approximately 3 million in 1971 when President Nixon signed the National Cancer Act to over 10 million individuals today. Along with the rapidly growing number of individuals, the current focus on cancer survivors is driven by a number of important factors, including a greater emphasis on patient-centered issues and increasing expectation by patients for a good quality of life. However, along with the improved survival after cancer treatment, there is the increasing identification of life challenges in the post-treatment period - specifically late and long term effects. In 2005, The Institute of Medicine (IOM) published a comprehensive report, From Cancer Patient to Cancer Survivor: Lost in Transition that presented the broad domains of problems for which adult cancer survivors are at risk after treatment. These include the physical/medical effects of treatment, such as organ toxicity and second tumors; psychological effects, such as anxiety and depression; social changes, including changes in relationships as well as economic and educational barriers; and existential changes, including personal growth along with the loss that may occur. Included in this IOM report, is a description of models of adult follow-up care that focuses on the identification of these problems and the delivery of needed services. In contemplating how to develop these models, there are three general items to consider. First, the care should be integrated and multidisciplinary. Second, there needs to be a designated individual who coordinates care across disciplines that share responsibility. Third, all post-treatment care should be patient centered. The specific components of any care model should include the following strategies: surveillance for cancer recurrence, prevention and detection of new cancers, interventions targeted to the consequences of cancer and its treatment and, coordination between specialists and primary care providers. Any plans to consider, plan and implement new models of care delivery for adult survivors benefit from a review of the pediatric survivor care model that is in place in this country. For many years, pediatric oncologists have followed their survivors in dedicated clinics. The approach has been to provide continuing services based on the knowledge that these children face long-term health consequences of treatment as they age. These clinics are multidisciplinary (most often staffed by a medical oncologist and nurse practitioner) and are not disease specific. In the adult community, there are a number of new adult survivorship programs where different care models are being piloted. These models fall into three categories. The first model is the application of the pediatric multidisciplinary approach to adult post-treatment care. It is comprehensive, but expensive and difficult to implement for large numbers of patients except in a few academic centers. The consultative model offers the survivor a one time visit with the focus on providing a medical treatment summary and a systematic plan for future surveillance. This model has minimal financial impact on a practice, can be implemented in the community as well as at academic centers, but doesn't address ongoing survivorship needs. The third model is a nurse practitioner model where adult survivors receive ongoing care from the nurse practitioner in a separate clinic or as part of the treatment team. This model is the most common approach to care that is being assessed in cancer center survivorship programs. Regardless of the oncology follow-up model used, sharing follow-up care of survivors with primary providers is essential. This approach is well established in other chronic disease care models and can be used in oncology using a risk- based approach to deciding who follows the survivor and for what problems. First, in a shared car model, the non-oncologic problems are followed by the primary care provider. The determination of whether the survivor needs to always be followed by the oncologist is based on the likelihood and severity of late effects of treatment. Essential to the success of this joint care model is communication and the periodic transfer of knowledge between the oncologist and primary provider. In developing a follow-up clinic, whether free standing or one that is imbedded within the treatment team, there are essential services to be considered, instituted and evaluated. The follow-up visit is oncology focused with the oncology provider assessing the individual for cancer recurrence and/or a new primary cancer based on known risks. Included in the visit is a focus on the assessment and management of chronic and late physical and psychosocial effects of the cancer and its treatment. Screening recommendations for other cancers such as mammography and colonoscopy are essential. The identification of non-cancer co-morbidities, such as diabetes, is documented and a referral made to the primary care provider. The promotion of healthy behaviors such as exercise and smoking cessation is a critical component. Since little has been done beyond formulating plans for new delivery models for adult survivor care, there exists both the need and opportunity to utilize these models as platforms for research. Such research can focus on further identifying and developing interventions for the long-term and late effects of treatment with particular focus on groups not yet studied. In addition, rigorous studies comparing adult models to usual care will be required using outcome measures of mortality and morbidity along with quality care indicators. In moving ahead to develop models for delivering survivorship care, there are challenges both great and small. In the US we have a fragmented delivery system that makes it difficult for us to provide continuous services even under the best of circumstances. In adult oncology, no evidence-based (or even consensus-based) guidelines exist for long term follow-up. No formal education and training for health professionals about this period of care exist. There is a lack of awareness about long term and late effects in the medical community and among survivors themselves. And insurance coverage for these services can be a barrier. Despite these challenges, the time has come to address the care of adult survivors head on.