New Report Aims to Improve Care for Long-Term Cancer Survivors

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Cancer Survivor Care

The American Journal of Nursing (AJN) today released a consensus report based on the outcome of the invitational symposium, "The State of the Science on Nursing Approaches to Managing Late and Long-Term Sequelae of Cancer and Cancer Treatment," which took place in Philadelphia on July, 2005. The report, which will appear in the March issue of AJN, offers action strategies and recommendations, from a nursing perspective, for addressing the health needs of the more than ten million long-term cancer survivors alive today. The report details knowledge gaps and barriers to optimal care that exist in today's health care system and makes recommendations for clinical practice, research, education and health policy. The initiative was cited in the Institute of Medicine's November report, From Cancer Patient to Cancer Survivor: Lost in Transition.

"The late effects of cancer and treatment for survivors diagnosed as adults remain poorly documented, yet up to 75% of survivors have health deficits related to their treatment," said symposium co-leader Carol P. Curtiss, MSN, RN-C, clinical nurse specialist, Curtiss Consulting, and adjunct faculty member at Tufts University School of Medicine, Boston, Mass. "Over half of cancer survivors have chronic pain; 70% experience depression; and, one third experience infertility."

Her co-leader, Pamela J. Haylock, MA, RN, cancer care consultant and doctoral student at the University of Texas Medical Branch School of Nursing in Galveston, TX, added, "The relative roles of primary care providers and specialists who care for cancer survivors are not clear. Since it is primarily nurses who manage these side effects, nurses often serve as catalysts for addressing their needs."

The report concluded that science and nursing approaches that address the needs of long-term cancer survivors are in the early stages. Nursing leadership, coordination and participation were affirmed as central to moving the agenda forward by facilitating communication and collaboration with organizations engaged in improving survivorship care. As the largest and most trusted (Gallup Poll, 2005) group of health care professionals, nurses are in all settings and thus the ideal providers to monitor for problems so early interventions can be employed.

The group reached consensus on the following recommendations:

  • Shift cancer care to a wellness model that incorporates health promotion and disease prevention.

  • Support the development of a comprehensive national cancer survivor database to facilitate follow-up and surveillance.

  • Improve access to care to address needs for all long-term cancer survivors.
    Conduct educational outreach for health care providers, survivors and the general public.

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  • Expand research on all survivor outcomes, focusing on quality of life and care.

  • Improve interdisciplinary and multidisciplinary collaboration and communication to deliver coordinated care.

  • Advocate increased research funding to generate results that can be readily applied in practice.

  • Encourage consultation with cancer survivors and front-line providers at every level.

"Survivors are a vulnerable population because their history of cancer may shift attention away from such important health problems as angina, congenital heart failure and diabetes," said Terri Ades, MS, APRN, director of cancer information, American Cancer Society. "African American, poor and elderly people are even less likely to receive necessary care. Quality of life issues differ from the problems they face at the time of diagnosis and treatment including: fear and uncertainty, changes in family roles, self image and esteem, comfort, physiologic function, mobility; employment, recreation, access to ongoing health care and increased risks for additional cancer diagnoses."

According to Susan Leigh, BSN, RN and founding member of the National Coalition for Cancer Survivorship, cancer survivor and advocate, "I was diagnosed with Hodgkin's disease when I was only 24-years old. At that time my care focused strictly on physical survival. The rest of me seemed superfluous to most of those caring for me. Only the threat of death persuaded me to return for the next round of chemotherapy. It took months for my bone marrow to recover, but it took years for my spirit to heal."

Today more than 60 to 65 percent of adults in the United States who are diagnosed with cancer can expect to be alive in five years.1 The number of diagnosed cancer cases is expected to double by the year 2050 as the population ages and increases.2 With continued advances in strategies to detect cancer early and to treat it effectively, the number of people living years beyond a cancer diagnosis will continue to increase.

"A lot of work needs to be done to enhance both the quality of care and life for cancer survivors," said Diana Mason, RN, PhD, FAAN, editor-in-chief, American Journal of Nursing. "Nurses are clinicians, educators, administrators, advocates and researchers who can lead the way in promoting, designing, conducting and participating in cancer survivorship research. We need to assure that the life we are saving is worth living. Nurses can alter the outcomes of the cancer experience so that the crisis of cancer will not lead to despair, but of new strength and serenity."

The symposium was a joint project of AJN, the American Cancer Society (ACS), the National Coalition for Cancer Survivorship and the University of Pennsylvania School of Nursing. Funding came from the Agency for Healthcare Research and Quality [AHRQ grant 1R13 HS16072-01), ACS, Lance Armstrong Foundation, and pharmaceutical companies (Sanofi-Aventis, Amgen, Novartis, Endo Pharmaceuticals, MGI Pharma, and Ortho Biotech Products).

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