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Barriers and Outcomes in the Management of Cancer Survivors
Ernest H.Rosenbaum, MD

There are now over 10 million cancer survivors in the United States, and a great deal of attention is now being directed to assist and support them after a diagnosis of cancer is made.

Most cancer patients are cared for in a community setting rather than major cancer centers. It has been noted that additional information is needed for follow-up care after treatment has been completed. This could be done by primary physicians, nurses, or by specialized survivor clinics and programs.2

With the new emphasis on cancer survivors, how best to follow them is currently under study, and programs are being evaluated and implemented. The primary goal is to help in the shift from acute care to chronic care and follow up, emphasizing quality of life and wellness. Guidelines are now being developed to promote optimal quality care.

Symptom management is very important as well as providing the tools not only for cancer prevention, screening post-treatment for recurrent or new cancers, as well as controlling for optimal symptom management. This, of course, will differs depending on the age, sex, and physical condition of the patient, as well the available support from family, friends, and community.

There is also a need for improved analysis of different cultures, as well as cultural beliefs as the support and care of the cancer patient varies greatly in diverse parts of the world

Some of the barriers for survivors involve:
1. Awareness and knowledge about cancer during and following treatment are vital pieces of information for support of the cancer patients and their caregivers. Many resources are now available through survivorship groups as well as the National Cancer Institute survivorship office, the National Coalition for Cancer Survivors and the American Cancer Society.

2. Courses for physicians, nurses and caregivers can be very helpful in providing state-of-the-art support for cancer survivors.

3. Knowledge of potential long-term latent side effects of cancer and its treatment need to be provided, as well as a medical record of the survivors diagnosis and treatment side effects.

4. Knowledge deficits lead to misunderstanding which often appear as depression, and also its cognitive problems which evolve not only from the cancer but its treatment.

5. A major barrier is the inefficiency and inadequacy of the health care system at the present time, whether in regards to cost of medications, inefficient follow up, or other health care obstacles. With more information and improvements in the survivorship follow-up programs, hopefully some of these problems will be solved.

6. A shift toward a wellness approach with diet, exercise and supportive care as part of the survivorship's lifeline helps survivors gain the best quality of life.

7. The emphasis on long-term follow up is now more appreciated and is being emphasized. Of note is that it is estimated that 80% of cancer care is delivered in the community; thus knowing about community services are vital. This will include screening and supportive care (exercise, nutrition, psychological support and education).

8. There are several health studies ongoing and providing information, such as the Nurses' Health Study and Women's Interventional Nutrition Study (WINS). This data will helps provide a framework for improved care.

9. Financial barriers, despite insurance policies, are a major consideration. A great proportion of the American population does not have adequate health insurance. What insurance many do have is often inadequate to cover the expenses of long-term treatment and follow up. Innovative ways of obtaining funding are now being evaluated and hopefully better solutions can be implemented in the near future.

Thus, in conclusion, with medical advances in therapy, there will continue to be an increasing number of survivors who merit specialized care to help remove barriers currently in place.

The Wellness Plan

It appears that the nurse practitioner will be playing a central role not only in the treatment but in the follow up of cancer survivors. Promotion of wellness with good nutrition, exercise, psychological/emotional support, and patient education during and following treatment is essential.

After completion of therapy, the patient has to be prepared for long-term follow up of ten to twenty plus years. Follow-up care has changed because of the improved diagnoses and treatments. Thus new coping changes in medical care, lifestyle, social relationships, as well as solving and adjusting to medical problems have become paramount.

Side effects of the cancer or its treatment have to be controlled, such as pain, distress, fatigue, sexual concerns, as well as maintaining and promoting optimal physical functioning.

By developing a comprehensive program following diagnosis and treatment one can provide optimal care and promote wellness. A wellness plan should be provided for each patient and family, which encourage a positive attitude. Open discussions with physicians, nurses and the medical team are vital to promote knowledge, education and obtain realistic projections the future.

1 Gammon, M. D., et al., J Natl Cancer Inst, 1998; 90: 100-117.
2 Lewis, L., Discussion and Recommendations: Addressing Barriers in the Management of Cancer Survivors. The AJN, March 2006; vol. 106: #3 supplement, pg. 91-95.
3 Gillis, T. A., Graham, H. F., "Watch for Deconditioning in Cancer Patients and Prescribe, Exercise," Journal of Supportive Oncology, vol. 5, #2, February 2007, pg. 94-95.
4 Ganz, P., "Cancer Survivors: Issues in Symptom Management," Journal of Supportive Oncology, vol. 5, #2, February, 2007, pg. 73-75.
5 Chlebowski, R., et. al., J Clin Onc, 2002; 20: 1128-1143.
6 Michels, K. B., et. al., Arch Intern Med, 2006; 166: 2395-2401.
7 Chlebowski, R. T., et. al., Journ Natl Cancer Inst, 2006; 98: 1767-1776 - an ASCO presentation, 2006.

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