Looking Beyond Survival

As oncology professionals, we all look forward to seeing our successfully treated patients come in for their follow-up visits. In a busy day filled with making complex medical decisions, delivering bad news, managing symptoms, and dealing with insurance companies, it is a real highlight. These individuals are among the over 10 million cancer survivors in the United States and represent 3.5% of the population. However, along with these optimistic results come new challenges for survivors that require ongoing medical care and psychosocial support. Survivors face lifetime health risks that are dependent on the cancer, treatment exposures, genetic predispositions, comorbid health conditions, and lifestyle behaviors.

Based on treatment exposures, the survivors of pediatric cancer are at significantly increased risk for premature mortality and serious morbidity as adults. For this reason, the pediatric oncology community has established follow-up clinics, developed guidelines, and implemented systematic plans of care to ensure a formal approach to modifying, identifying, and treating late effects.

For survivors of adult cancers, although the negative effects of cancer treatment have been recognized for many years, knowledge about the specific consequences of cancer and its treatment is still evolving. The identified problems span the medical, psychosocial, and economic domains and may impact both quality of life and survival. Even as research continues to identify long-term effects of treatment and who is at risk for these problems, there is a need to begin to develop and evaluate a system for the long-term follow-up of adult survivors—a programmed approach where the intensity, frequency, and content of the visit is tailored to the specific needs of the survivor population.

Fortunately, national attention is increasingly being focused on the issues facing cancer survivors. In 2005, the Institute of Medicine released a valuable report, From Cancer Patient to Cancer Survivor: Lost in Transition, that provides a comprehensive review of the long-term risks from treatment that cancer survivors face. It also contains recommendations for how survivors should be followed, including models of care that, if implemented, would provide a seamless coordination between health-care providers. At present, tremendous attention is appropriately paid to the diagnostic and treatment period of care, but afterwards, the plan for "usual" follow-up is not systematic and often has little structure beyond a periodic assessment for recurrence.

Based on our current knowledge about the long-term and late effects of treatment, there is a set of posttreatment services that should be formalized as a distinct phase of quality cancer care. Included in such a visit should be surveillance for recurrence, evaluation of and treatment for medical and psychosocial consequences of treatment, recommendations for screening for new primary cancers, health promotion recommendations such as smoking cessation, diet, and exercise, and provision of a written care plan to the patient.

Since most cancer patients are diagnosed and treated in the community rather than in academic health centers, they also receive their oncology follow-up care in their community. The cancer survivor is seen not only by the community oncologist, but also by a primary care provider, yet there is little clear delineation of roles and expectations for who is responsible for what issues. The challenge then is to develop, implement, and evaluate a "shared care" model for oncology similar to the models that already exist for other chronic diseases, such as diabetes and chronic renal disease. In both these examples, improvements in patient outcomes have been demonstrated. To be successful, this model requires, at a minimum, an ongoing communication link between the providers, as well as periodic transfer of knowledge so that the primary care providers are aware of the long-term and late effects of cancer treatment.

To recap, we have a growing body of information about the medical, psychosocial, and economic issues facing survivors, we have recommendations from national groups about the importance of addressing this period of oncology care, and we have examples of care models from other disease groups that are effective in providing quality services. So what we need now is action. It will certainly take national groups such as the National Coalition for Cancer Survivorship, the American Society of Clinical Oncology, and the Oncology Nursing Society, but most of all it will take the commitment of individual oncology physicians and nurses, along with committed patient advocate groups, to make it happen. Despite the barriers to implementation and our still-evolving knowledge base, we need to begin developing follow-up care plans, designing efficient visits, and assuring communication between providers, all the while evaluating outcomes. It's important to not make the perfect the enemy of the good.

—Mary S. McCabe, RN, MA