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Survivorship Program
Developing a Psychosocial-focused Survivorship Program in a Community Cancer Center Scott D. Siegel, PhD, Cindy Waddington, RN, MSN, AOCN Helen F. Graham Cancer Center, Christiana Care Health System, Newark, Delaware
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his article describes a psychosocial model of survivorship developed at the Helen F. Graham Cancer Center (HFGCC) in Newark, Delaware. We developed this survivorship program to better address the needs of our patients as they transition to life after treatment. The sections that follow will provide an overview of our cancer center, the process through which we developed our program and why we chose to adopt a psychosocial model, the nuts and bolts of the program, and a brief review of some preliminary outcomes. We also consider future directions, both in terms of our specific survivorship program and with regard to the larger, national conversation about survivorship.
The Helen F. Graham Cancer Center HFGCC at Christiana Care is a 184,000-square-foot facility located in northern Delaware, approximately 40 miles southwest of Philadelphia. HFGCC treats more than 3200 new cancer cases annually, providing care to patients from all of Delaware and parts of Pennsylvania, New Jersey, and Maryland. In 2007 HFGCC was selected to be one of 16 community hospitals in the National Cancer Institute Community Cancer Centers Program (NCCCP) pilot, a program that recently expanded to 30 hospitals.1 The primary goals of the NCCCP include: expanding clinical trials in the community setting, particularly among underserved populations; reducing cancer healthcare disparities; improving the collection and storage of biospecimens; and exploring the utility of a national database of electronic health records. In addition to these primary goals, NCCCP’s secondary goals include improving survivorship and palliative care initiatives. Participation in the NCCCP significantly bolstered our survivorship program. Developing the survivorship program Prompted in part by the 2005 Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition,2 we set out to develop a survivorship program that met IOM recommendations and maintained a
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survivor-centered philosophy. As a first step, we completed a baseline assessment to identify our strengths and areas for growth. We sought direction from the literature, input from the medical staff, and feedback from survivors through the use of self-report surveys and qualitative research. The results of our baseline assessment revealed that we most needed to address the life-aftertreatment phase of the continuum of care. Specifically, it was clear that our private physician practices provided quality follow-up medical care, but there was little infrastructure in place to connect survivors with our support services posttreatment. Finally, our survivors’ chief posttreatment needs were multidisciplinary and largely psychosocial in nature. Informed by these findings, we developed a psychosocial-focused Survivorship Multidisciplinary Center (MDC) that is offered to survivors on the conclusion of active treatment.
We have virtually eliminated the “doorknob phenomenon” in which a patient waits until the very end of an appointment to express a core concern. Nuts and bolts Survivors are referred to our Survivorship MDC through one of a few mechanisms: self-referral (we advertise our program through brochures available throughout the cancer center), physician referral, or through our screening program. Currently, we screen survivors about 1 month after completion of treatment for a range of physical and psychosocial unmet needs. Survivors who express multiple or complicated needs are referred to the Survivorship MDC. Most survivors who participate in our Survivorship MDC attend both initial and follow-up appointments. At the initial appointment, about 1 hour in length, we introduce each survivor to all the members of the MDC team, which includes a health psychologist, an oncology clinical nurse specialist, a holistic nurse certified by the American Holistic Nurses Association,
and a licensed clinical social worker. We then orient the survivor to the format of the initial appointment, which consists of two phases. In the first phase, we ask the survivor to tell his or her story. For most survivors, this is the first opportunity to reflect on the typically fast-paced and difficult period of time that started at diagnosis and continued to the end of treatment. It is not unusual for a survivor to become emotional while describing challenges, changes, and accomplishments. In fact, as a team, we pay a lot of attention to strong affect, because it usually guides us when making decisions about where to focus. For instance, it is not unusual for a survivor to come into our meeting presenting with one concern, but over the course of storytelling, to reveal several other more affectively charged concerns. Emphasizing the story over the traditional taking of the patient history is one example of our decidedly nonmedical approach. Although taking 20 to 30 minutes to hear a survivor describe his or her chief complaint(s) may seem inefficient, we have learned that the opposite is true. It is not unusual, for instance, to hear from a survivor that he or she has sought help from multiple other providers without ever being asked about some core concern (eg, depression or pain). We have also virtually eliminated the “doorknob phenomenon” in which a patient waits until the very end of an appointment to express a core concern. After a survivor completes his or her story, we begin to pivot to the second phase of the appointment, in which we gather more information, provide feedback to the patient, and document the treatment plan. The health psychologist may ask additional questions about psychiatric history, social history, and psychiatric symptoms. The oncology clinical nurse specialist pays particular attention to long-term and late side effects of treatment and other medical issues, including weight management, increasing physical activity, menopausal symptoms, nutrition, and smoking cessation. Our holistic nurse, who is also a massage practitioner and certified yoga instructor, often assesses the survivor’s interest in complementary medicine. Then, the licensed clinical social worker listens for needs that may be met by community and government agencies, in addition to providing supportive counseling.
After gathering any additional necessary information, our team typically provides some brief education to the survivor (eg, expected recovery time from radiation treatment). The education can be useful in its own right, and it often helps to normalize the survivor’s experience, as it is not unusual that we hear a survivor ask some version of, “Oh, so I’m not the only one?” Finally, we begin to work with the survivor to develop specific and realistic goals to help address self-identified concerns. These goals may include referrals to additional healthcare providers, such as a registered dietitian, counselor, psychiatrist, or wellness coach (all available either within our cancer center or on our medical campus). Given the survivor’s concerns and interests, we may also review specific evidence-based wellness and stress-management practices, such as establishing good sleep hygiene, learning diaphragmatic breathing and meditation, or developing a journaling practice. We conclude the intial visit by providing informational handouts, referral information, and scheduling the follow-up visit. At the follow-up visit, usually scheduled for 6 weeks after the initial appointment, we check in with the survivor to assess for progress. In most cases, we see improvement. When we do, we usually offer our support and encouragement, and inquire about other unmet needs. In the few cases that show little or no improvement, we use our time as a “back to the drawing board” appointment. Sometimes the treatment plan and goals we developed in the initial session were not adequate to meet the survivor’s needs. Other times, the survivor’s circumstances have changed, thus requiring a new approach. For survivors who need further help, we offer to schedule additional follow-up appointments as needed. Preliminary outcomes To date, 90 survivors have participated in our Survivorship MDC. In reviewing the demographic descriptive statistics, our average participant is a white woman in her 50s with a history of breast cancer. Overall, there are significant disparities in gender, ethnicity, and tumor site—these statistics highlight the need to provide better access to men, to survivors of cancers other than breast cancer, and to ethnic minorities. All the survivors participat-
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