When 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 community 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 discussed 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 post-treatment 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:
The TNMC cancer survivorship program was structured into two distinct practice elements:
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, non-Hodgkin 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.
Based on team feedback, the physician creates a Survivorship Summary Report and Plan of Care (Figure 1). This document provides a road map for future survivorship:
The Internal Medicine Survivorship Follow-up Clinic at TNMC is designed to implement the Survivorship Summary Report and Plan of Care for individuals who do not have a primary care connection and to provide ongoing general medicine care to patients as requested by the medical oncologists.
Team composition and roles Identifying key disciplines to assist in developing the model of care and creating the team was instrumental to the survivorship program effort. The role of the internal medicine physician is multifaceted.This provider is the director of the survivorship program and is pivotal in creating the vision, obtaining organizational commitment, leading program design, and designing ongoing evaluation. From a clinical perspective, the internist performs a history and physical examination focusing on the longterm/late effects of cancer treatment and strategies for surveillance, ensures that immunizations are up to date, and identifies other medical conditions, such as hypertension or diabetes, that require attention. The internist then incorporates the findings from the other members of the multidisciplinary team into an individualized survivorship plan of care.
The physician is responsible for collaborating on marketing initiatives to increase awareness among providers and secure patient recruitment through educational offerings, publications, brochure development, and media coverage. Exploring funding opportunities through grants and administrative avenues are also key responsibilities.
The nurse serves as the survivorship case manager and coordinates many of the patient care activities. An introductory letter, data collection tools, scheduling templates, and patient education materials were designed and developed prior to program initiation to meet various documentation, educational, and research needs. Providing patient navigation through all assessment points, participating in comprehensive care planning, and consistently communicating on all aspects of the process are crucial functions of the nurse to ensure the patient has a satisfying experience.
The social worker assesses the overall psychosocial state of the survivor. The patient is asked to complete the Brief Symptom Inventory 18, which measures psychosocial distress, and the Functional Assessment of Cancer Therapy—General, which measures overall adjustment and well-being after a cancer diagnosis.3 Responses on these standardized tools are discussed with the survivor and used to identify high-risk areas and guide care planning.
The social worker collaborates with the survivor to explore the support systems and coping strategies used during and after treatment. Relationship changes and concerns, including intimacy, are discussed. Re-entry into practical and instrumental roles (eg, parent, spouse, employee) and anxiety regarding return to work, insurance coverage, and finances are explored. The social worker provides feedback on strengths and concerns of the survivor. If needed, a patient is referred for counseling or psychological intervention.
The relationship between diet and cancer recurrence is still evolving, but studies have shown that reducing fat by choosing leans meats and avoiding high-fat and caloric foods, increasing intake of fruits and vegetables, and maintaining healthy body weight play a role in cancer prevention.4 The nutritionist reviews the patient’s current diet and outlines methods to incorporate healthy eating. The survivor is counseled on dietary changes that can reduce the risk of chronic diseases, such as heart disease and diabetes. A plan for weight management is another critical area, and advice is given on increasing, maintaining, or losing weight safely.
Patients often have numerous diet and supplement-related questions. The volume of information available to patients from many sources can make it difficult to discern scientifically based information from testimonials and fads. The nutritionist assists with evaluating claims and products that promote cancer prevention or recurrence. The patient is given reputable sources and association contacts that provide accurate information on a variety of dietary claims.
The oncology pharmacist is a key member of the survivorship team. The pharmacist reviews past courses of therapy and provides a comprehensive list and cumulative doses of all chemotherapy the patient has received. Because antineoplastic agents administered during treatment can result in a wide range of toxicities, contributing to long-term side effects for the survivor, it is imperative to review this information.5
The pharmacist assesses all current medications, both prescription and over-the- counter products, that the patient is taking. It is important that herbal supplements and any home remedies be part of this comprehensive review. This assists in determining any potential drug–drug interactions that can occur with these seemingly harmless interventions and ensure maximum benefit from the medication regimen.
The physical therapist takes an active role in evaluating current physical state and outlining a program for optimal functioning. The therapist focuses on the overall level of physical activity and fatigue, bone health, and, when indicated, neuropathy and lymphedema management. The ability to perform daily activities and endurance are assessed. Special instructions that range from specific exercises to a structured walking program may be delivered.
Maintaining bone health, especially in breast cancer and lymphoma survivors, requires use of bone density scans, ordered by the physician, to identify the presence of osteoporosis and osteopenia.6 If either of these conditions are present, weight-bearing exercises will be recommended by the physical therapist. All survivors are given information on ways to maintain healthy bones.
The physical therapist also assesses lymphedema and neuropathy. Individuals at risk for lymphedema are educated by the physical therapist on precautions and self-care techniques to reduce the risk. Those with symptoms are taught appropriate interventions, such as proper skin care, self-massage, and correct compression. Neuropathy assessments are performed based on specific regimens or patient symptoms. Any patient who would benefit from further physical therapy interventions is scheduled for follow-up.
Visit completion Upon completion of each team member’s assessment, a group session is held to share data and create a comprehensive survivorship plan for the patient. Recommendations are discussed with the survivor and summarized in a written document. A copy of this report is given to the survivor, the referring oncologist, and, if identified, the patient’s primary care provider to facilitate individualized follow-up care.
Outcomes To ensure ongoing success of the survivorship program, outcomes are tracked. Patient and team satisfaction, financial results, and program volumes are trended and shared with the multidisciplinary team and the cancer service line administrator to evaluate current functioning and identify opportunities for improvement. A patient survey was developed to gather feedback on program elements, clinic flow, and team member functioning. Surveys are mailed 1 week after the visit. Initial results, outlined in Figure 2, revealed a high level of satisfaction with the program as evidenced by greater than 80% of participants rating many elements as “very good.” There were, however, opportunities for improvement.
Program improvements Areas identified for improvement included reducing the length of time in the assessment clinic, the wait between seeing team members, and the time required to complete the social work tools. There were requests for both formal educational offerings and informal networking sessions. There were also suggestions for including other services.
Improvements that have been implemented focused on timely notification of patient readiness between interviews to decrease wait times between providers and distributing the inventory document upon arrival so it can be scored before the social worker assessment. An educational series on survivorship topics, development of a support group, the addition of massage therapy at the clinic location, and the hosting of a spa night have been added. The spa night is designed for survivors to network with other survivors while receiving an array of amenities, including massages, facials, make-up applications, aromatherapy, and a light meal. The needs for physical therapy were greater than originally anticipated. To meet this demand and to accommodate follow-up recommendations, physical therapy services were increased.
The survivorship program has been a successful journey for TNMC. The lessons learned and the next steps in development are listed in the Table. Although great strides have been made, more will need to be done to ensure that cancer survivors have the knowledge and resources necessary to lead a satisfying life. We hope this review will serve as a guide for those committed to addressing the needs of survivors through the development of a comprehensive survivorship program.
Acknowledgments The authors extend their appreciation to our team members: Deborah Darrington, MD; Tom Davis, PharmD, BCOP, RPh; Lisa Nichter, RD, LMNT, CDE; Betty Perez, PT, BS, MA, CLT; and Sue Stensland, LCSW.
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