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Cancer Survivorship Care Models |
Introduction
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Survivorship care following the diagnosis of cancer is vital, as it is well-known that cancer patients have a lifetime health risk, dependant on the type of cancer, stage of disease, treatments, genetic predisposition, co-morbid health problems (heart disease, lung disease, diabetes, etc.), and lifestyle behaviors.
By addressing and assessing these issues, various programs have been recommended for appropriate follow up of cancer survivors, whether it be in a primary oncologist/primary physician community setting, a university or specialty type of cancer center, or a specialty survivor's clinic, either in the community or at an academic medical center.
Knowing that since 1971, there has been an increase in survivors from three to ten million (3.5% of the U. S. population), the need becomes obvious, since the patient population is aging, and the five-year survival rate has increased from 50 to 64% and is currently rising. Thus, there will be a continued increase in cancer survivors.
In order to provide adequate medical follow-up care, psychological support, careful follow-up observation and treatment to reduce side effects from therapy, observe for secondary or recurrent cancers, and promote better, healthy lifestyles can help increase longevity and survival. This will help reduce the risk of premature mortality, serious morbidities and adverse effects on the general health status.
Additional goals are gained by promoting healthy nutrition, an exercise program, and a supportive care program. Concerns needing to be addressed are decrease in cognitive function, premature menopause and infertility, from gonadal (ovary and testes) dysfunction often due to cancer therapy, sexual dysfunction, fatigue, osteoporosis, lymphedema, and anthracycline/Herceptin related cardiomyopathy (heart damage).
Knowing these potential problems, long-term follow-up of ten to twenty years and for life are an important part of risk reduction and promotion of better health.
- Various types of comprehensive survivorship follow-up plans have been proposed, and the implementation of these potential plans will differ, depending on the location of the patient, whether in a community being treated in a community setting, or an academic institution, or a survivorship specialty clinic. The follow-up programs are generally surveillance programs with the goal of controlling treatment side effects, diagnosing new or recurrent cancer earlier when treatment is usually more effective, and promoting ways of reducing co-morbid problems.
- 1. A community-based, shared-care model is needed by most cancer survivors, as the majority of cancer patients are treated in a community setting. This involves a shared-care model, with care being shared by the treating oncologists and the referring physicians.
2. In addition, in the shared-care model, subspecialists, usually in the community, are involved, such as endocrinologists for diabetic guidance and control.
3. Other co-morbidities are treated and followed in a similar way, such as for chronic renal disease or cardiac management. By seeing multiple physicians, follow up and appropriate treatments have been shown to be more successful. Data validating this approach is currently under study.
Thus far, using appropriate guidelines, the outcomes did not differ in a study by Grunfeld on breast cancer survivors followed either by oncologists or primary care physicians, as long as the guidelines, such as mammography, frequency of physician evaluations, etc., were followed.
Thus, in summary, in the shared-care model, the primary care physician refers a case to the oncologist for therapy, but the primary care physician continues to follow the patient for routine health maintenance and the management of co-morbid problems. Later, following cancer therapy (usually about one to two years), most of the care is transferred back to the primary care physician with periodic follow-up visits to the oncologist. The primary care physician is supplied with a Patient Survivor Care Plan that summarizes treatment and follow-up care, including potential side effects and surveillance recommendations for recurrent tumors or secondary tumors. This, of course, will differ with patients with low-, intermediate- or high-risk cancers for recurrent disease and/or co-morbidities. Often in the shared-care model, a nurse specialist in the oncology office participates with follow-up care. Information and educational support groups and one-to-one support can be very helpful in supporting survivors.
An electronic health care record (Patient Survival Care Plan) can help provide follow-up information, both for the primary care physician as well as for the patient who should keep records of his/her cancer therapy and follow-up care. This can be Web-based or with summaries of follow-up visits, laboratory, x-ray, and other vital reports.
Goals
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- 1. Barriers to this system are the time needed for appropriate primary care physician and oncology physician for follow-up care and record keeping, especially when chronic diseases such as diabetes, hypertension, or kidney disease require additional time for treatment, as well as problems with adverse side effect control following therapy. There is often also a disconnect following referral from the primary care physician to the oncologist and referral back for primary care medical follow up, as sometimes all care is continued in the oncology office, and, thus, it is no longer a shared-care program.
2. Follow-up care of adult cancer survivors at academic institutions. At academic institutions, long-term care is often offered, and this, many times, is part of a research follow-up program. The NCI is also promoting active cancer control efforts.
Many children's centers, such as St. Jude's Hospital, have promoted pediatric survivorship follow-up programs that are coordinated by oncology nurse practitioners, social workers and psychologists. As survivors transition many years, often latent co-morbid or recurrent cancer problems are diagnosed, and surveillance becomes a lifelong care problem. Both counseling and education are part of the pediatric program's success.
For adults, often problems, such as lymphedema, body image changes, depression, cardiac disease, weight gain and obesity need special attention. In a multidisciplinary, single-disease program, these issues are usually addressed with follow-up recommendations and program implementation to reduce and treat these risks usually incorporated in a follow-up program.
Since diseases differ in diagnosis, treatment and necessary follow up, the follow-up care can be either disease or treatment specific, such as complex and targeted therapy for breast cancer. A great deal of flexibility in the follow-up programs is thus necessary.
Over the last twenty years, nurses have led the way in survivorship follow-up programs and have extensive experience and, are relied upon in most successful survivorship programs. With the use of appropriate medical summaries and survivorship surveillance programs, patients receive a higher grade of medical treatment.
In addition, nurse practitioners are often the leaders in a survivorship clinic and often are the main source of follow-up information and services. Frequently, the primary care physician and the oncologist have close communication with the nurse specialist in this model. Control of co-morbid problems is shared and guided with a team approach.
- The goal is to promote better long-term follow-up care for cancer survivors through:
- 1. Improved communication between the medical treating oncology team and the primary care physician.
2. Collection of survivorship information to help promote better programs and information storage programs via a personal medical website.
3. Promote specialized multidisciplinary survivorship programs and care, such as has been demonstrated through the pediatric follow-up care programs, now well recognized for the standards they have set for follow-up care.
4. By using the team approach, better survivorship care is provided. The use of risk stratified follow-up for low-, intermediate- and high-risk cases is very helpful.
5. Improved health benefits and quality of life have been achieved through either the academic or community-based models, using shared-care principles.
Reference: Oeffinger, K. C. and McCabe, M. S., "Models for Delivering Survivorship Care," J Clin Oncol, 24: 5117-5124, 2006.
First appeared July 12, 2007; updated March 4, 2008