This 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 im proving 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 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-after-treatment 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.
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 initial 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 participating in the Survivorship MDC complete a validated, self-report measure of physical and psychosocial quality of life. In summary, the chief concerns among our survivors are fear of recurrence, general anxiety, fatigue and sleep changes, and pain.
At the follow-up Survivorship MDC appointment, survivors repeat the same quality-of-life assessment. From the start, we acknowledge that our survivorship program is not a randomized, controlled trial and that we cannot conclude that any observed changes in quality of life are a result of participating in the Survivorship MDC. That said, we have found statistically significant improvements in overall quality of life, fatigue, sleep, general anxiety, and depression. These changes may be the result of the passage of time and general recovery, participating in the Survivorship MDC, other factors, or some combination. We do not, however, find any statistically significant improvement in reported fear of recurrence. This is particularly noteworthy because fear of recurrence represents our survivors’ top concern, and neither the passage of time nor participating in our Survivorship MDC appears to help alleviate this concern. This finding is also consistent with reports in the literature, which document that fear of recurrence can persist unabated for many years after treatment has concluded. Achieving better understanding of and ways of treating fear of recurrence is one of our future goals.
Future directions Looking ahead within our program, we have chosen to focus on two areas for the immediate future. First, we were recently awarded grant support from the NCCCP to fund a new full-time survivorship nurse navigator. Our new navigator will focus on building relationships with our survivors as they are completing treatment and providing education about the possible challenges associated with making the transition to life after treatment. The navigator will follow up with survivors after treatment has concluded to screen for unmet medical and psychosocial needs, making the appropriate referrals as indicated (in cluding to our Survivorship MDC), and complete a treatment summary and care plan. It is also our hope that instead of relying on survivors to seek out our services, as we have in the past, our new navigator will be better able to reach out to underserved populations and reduce the disparities we reported.
Second, we hope to concentrate further on survivors’ fear of recurrence. We chose to make this a priority because fear of recurrence is the most frequently cited top concern of our survivors, fear of recurrence does not tend to improve over time,3 and currently there is no evidence-based treatment for fear of recurrence. Therefore, as a first step we have decided to develop an independent line of translational research to better understand fear of recurrence. In the longer term, after we have had the opportunity to further refine our program, our goal is to evaluate the effectiveness of our Survivorship MDC in a randomized, controlled trial.
Looking forward at the national level, cancer survivorship is in many ways a frontier. With the ongoing development of different models of survivorship programs across the country, there is as yet no gold standard for addressing survivorship—and it is unlikely, we believe, that there will ever be a one-size-fits-all model.4 For instance, cancer centers in rural versus urban communities will most likely need to reach their survivors via different avenues. Furthermore, whether cancer centers first address surveillance, follow-up medical care, or psychosocial aspects of survivorship depends on resources available at the cancer center and in the surrounding community.
Where we do see a strong emerging consensus is in the recognition that our responsibility to cancer patients does not end with the conclusion of their treatment. To meet our responsibility of helping patients transition to life after treatment, we believe more attention needs to be given to allocating the appropriate resources for survivorship care, continuing to foster awareness of survivorship in both healthcare providers and cancer survivors, and developing best practices for providing medical and psychosocial care to survivors.
Disclosure This project has been funded in whole or in part with federal funds from the National Cancer Institute, National Institutes of Health, under Contract HHSN261200800001E. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the US government.
References
To sign up for our newsletter or print publications, please enter your contact information below.
