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Survivorship Program
Bridging the Gaps in Cancer Care: The Development of a Survivorship Program in an Academic Medical Center By Susan Daubman, RN, BSN1; Theresa Franco, RN, MSN2; and Katherine Gross, RN, MSN3 1 Case Manager, Oncology; 2Executive Director, Cancer Care Service Line; 3Manager, Oncology Clinics, The Nebraska Medical Center, Omaha
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hen a cancer patient perseveres through the stressors of diagnosis and treatment, there are celebrations and relief. But the journey is far from over. Questions about what lies ahead surface. Moving beyond initial survival from treatment is the next phase of the cancer journey, which presents its own set of challenges. Late effects from chemotherapy and radiation, recurrence, secondary malignancies, and issues related to body image and quality of life are all part of the survivorship spectrum.1 Survivorship programs have emerged to help survivors move past diagnosis and acute treatment and on to the issues that may affect the rest of their life. Until recently, accurate diagnosis and expertise in treatment were the hallmark of a successful cancer program. Patients have expected a quality cadre of services that addresses their needs from initial disease presentation through treatment. It was common among cancer professionals to view the trajectory of cancer care through the acute phase of treatment and the requisite follow-up visits to ensure a sustaining cure or deal with ongoing disease-progression issues. Only recently has the cancer communi-
From left: Theresa Franco, RN, MSN; Katherine Gross, RN, MSN; Susan Daubman, RN, BSN.
ty redefined the spectrum of cancer care to include the needs of the cancer survivor. Long-term and late effects of treatment, ongoing cancer surveillance, general medicine needs, and managing chronic conditions and comorbidities are finally receiving attention, and several models of care have evolved. This article describes the development of a survivorship program at The Nebraska Medical Center (TNMC). The initial steps, design components, and implementation process will be dis-
Name: Mary Doe Age: 57 years old Body mass index: 51.4 Diagnosis: Diffuse large B-cell non-Hodgkin lymphoma/stage IV Treatment regimens: R-CHOP ¥ 6 cycles/R-ICE ¥ 2 cycles/Autoperipheral stem-cell transplant Recommendations for future follow-up: Continue surveillance with oncologist Annual physical with primary care physician, eye exam, thyroid, diabetic and cholesterol screening, Pap smear, mammography, flu shot Bone density every 2 years Monthly breast self-exam Screening colonoscopy every 10 years 1-year posttransplant immunizations Nutrition: 1600-calorie diet for weight loss of 15 lb to 30 lb over next 6 months Total fat: 50 grams/Trans fat: 0 Saturated fat: <11 Fiber: 25 to 35 Calcium: 1200 mg Additional nutritional resources: Hy-Vee Dietician and Taste of Home Healthy Cooking website Physical therapy: Home program for improving strength and balance Increase activity using Wii Fit, elliptical machine at exercise center Social work: Arranged to see psychologist regarding grief counseling Figure 1. Sample Survivorship Summary Report and Plan of Care
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cussed in addition to evaluation elements and lessons learned. The Nebraska Medical Center experience At TNMC the cancer care team embraced the importance of survivorship and mistakenly believed that patient needs were being addressed. An assessment in 2006 of the components outlined in the Institute of Medicine report From Cancer Patient to Cancer Survivor: Lost in Transition2 revealed that our cancer program was not structured to adequately identify or address cancer patients’ survivorship needs. There was no established survivorship care structure, few assessment tools to assist with long-term effects, no consistent follow-up plan, and, at best, only fragmented education around the importance of survivorship. A medical oncologist and the cancer service line administrator viewed these findings as a call to action to improve our comprehensive approach to quality cancer care. Efforts to develop a survivorship program at TNMC were launched. The first objective was to develop a greater knowledge base about all the facets of survivorship. A literature search was conducted to understand various models, key elements for inclusion, desired outcomes, and critical success factors. Feedback was solicited from a focus group of posttreatment cancer patients to understand their concerns about long-term care and level of preparation in dealing with survivorship issues. In addition, phone interviews were conducted with other cancer centers to gain understanding on how to build a successful survivorship program. The examination of the different survivorship care delivery models, coupled
with an opportunity to address some current practice challenges, resulted in the decision to adopt a physician-led model with an internal medicine physician with previous oncology experience at the helm. This individual was hired by the Division of Oncology to lead a multidisciplinary team in a comprehensive assessment, to develop a survivorship plan of care, and spearhead implementation. In addition, the internist would be available to see cancer patients who have other general health needs during acute treatment. This model achieved two objectives: (1) development of a comprehensive survivorship initiative; and (2) dedication of the oncology specialists’ time and expertise to acute treatment issues and planning for newly diagnosed patients. The components of TNMC survivorship program were identified: • Comprehensive assessment of cancer survivors by a multidisciplinary team • Recommendations that promote a healthy lifestyle that will enhance remaining cancer-free • Establishment of a road map for future cancer surveillance by developing a survivorship report • Mechanism for receipt of routine health maintenance. The TNMC cancer survivorship program was structured into two distinct practice elements: • The Comprehensive Assessment Survivorship Clinic • The Internal Medicine Survivorship Follow-Up Clinic. Program design and description The Comprehensive Assessment Survivorship Clinic at TNMC is for survivors who have completed their chemotherapy and/or radiation treatment, and currently includes breast cancer, nonHodgkin lymphoma, and Hodgkin lymphoma patients. This clinic uses a multidisciplinary approach to identify a survivor’s needs and to design strategies to meet these needs. Survivors attend this clinic once for half a day, where they are evaluated by multidisciplinary team members in 30- to 45-minute intervals. An internist, a nurse, a social worker, a physical therapist, a pharmacist, and a nutritionist are critical participants in the assessment. Other medical specialties and disciplines, such as psychology, are consulted when necessary. At the completion of this assessment, the multidisciplinary team meets to discuss specific recommendations for follow-up care and implementation strategies.
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