At the State of the Science symposium, nurses from four different cancer survivorship programs described the origins of their programs as well as features that should be part of any similar program. Carol P. Curtiss moderated, and other symposium participants joined in at the end with questions. See page 100 for participants’ affiliations.
Carol P. Curtiss: We would like to identify the essential components of all quality programs addressing the long-term needs of cancer survivors, whether in a tertiary center, a small rural center, or any other setting. This is a challenge, because even the oldest programs are still in their infancy.
Please tell us a little about your programs.
Jody Pelusi: I’m an oncology nurse practitioner in a rural area in Arizona. We don’t have a formal survivorship follow-up program. It’s informal, but it does seem to meet the needs of our patients and their families.
Our patient population is quite diverse in terms of ethnicity and economic status. Many patients drive several hours to get to their appointments.
Initially, patients are seen in consult for their cancer treatment. Then a nurse practitioner sees them to develop a symptom management plan to help minimize potential symptoms. The plan includes wellness issues such as nutrition, physical exercise, emotional support, stress management techniques, and patient education, both during and after treatment. I believe wellness activities are a crucial element of a treatment plan.
Because we are a small practice, we cannot provide all of those services ourselves. But in collaboration with the community, we can. One excellent local resource for us is the CancerFit program, which was developed by a physical therapist and a nutritionist. We refer patients to this program or to the local hospital for such services. We create a written plan and review it with the patient and family, and we send it to the primary care provider to ensure continuity of care.
When a patient completes therapy, we do an exit interview. We review what has been done, how the patient will be followed, signs and symptoms of disease or progression, possible long-term issues and concerns, and the role of wellness in the survivorship process. We develop a plan for this next phase—for the patient, primary care provider, and our office. Many people think that when cancer treatment is over, things should get back to normal. Patients cannot go back to where they were before the diagnosis, so they now have a new normal. At the exit interview, we review this concept with the patient and family and discuss how this experience affects their lives, now and potentially in the future. We also share survivor resources.
We have a monthly support group. Its purpose is to discuss the transition from being in active treatment to being off treatment and surviving.
We must honor each patient’s cancer journey. Many people want to give back, and we encourage them to participate in local volunteer programs. We include them as we design and implement support and education programs. They are the experts and can guide us.
Cyndy Simonson: We’re an urban academic institution and the only place in Richmond that treats underinsured and indigent patients for cancer. We’re in the design phase of our survivor clinic. Enrollment starts in the fall of 2005. The population will be diverse, since we have an extensive rural cancer outreach program.
Like all care in Massey, this clinic will be built around multidisciplinary teams. Each team will be headed by an adult nurse practitioner who focuses on care of oncology patients, in collaboration with an internist who specializes in cancer control research. This clinic will be the internist’s clinical practice. People who do not have access to any other primary care will receive their primary care through the nurse practitioners and internists. Patients can either self-refer to the cancer survivor clinic or be referred by providers.
Patients will get a detailed multidisciplinary assessment. They’ll leave with a plan detailing their risks, based on the type of treatment they’ve received. They can take this plan back to their oncologist or primary care provider, whoever will follow up with them. Some surgeons and oncologists are happy to turn patients over at the end of treatment; some are not, and want to continue to follow up with their patients. Patients without primary care options may stay in the clinic for primary care and follow-up.
We want the clinic to be as virtual as possible. We’ll build a Web-based survivor community. We’re also building a research database in addition to the clinical database on our patients.
Carrie Tompkins Stricker: I’m with the first adult cancer survivor program that was developed in the United States. Linda Jacobs, our director, developed the Living Well After Cancer program with a multidisciplinary group. It began in April 2001 with a substantial grant from the Lance Armstrong Foundation.
It is a tripartite program in two ways. We have three different missions: clinical practice, research, and education. Right now, the program is tripartite in its patient population as well: we have a testicular cancer survivor component, a breast cancer survivor component, and young adults transitioning from the Children’s Hospital of Pennsylvania (CHOP) once they reach age 21.
There are two main models. The clinical practice model, which initially was the model envisioned for all patients, is still the program for the testicular cancer survivors and for the young adults transitioning from CHOP. Linda Jacobs and a medical oncologist see each of these survivors. The focus of the visit is twofold: to get the patient into our database, from which we recruit patients for research studies and which we use to identify issues, and to do a comprehensive clinical assessment, education, and individualized interventions aimed at both primary and secondary prevention.
In part because providers are sometimes reluctant to give up their patients to another clinic, our breast cancer program has transitioned from a clinical practice model to a consultative model. We don’t actually see the breast cancer survivors in our cancer survivorship practice. From our comprehensive database, we identify all breast cancer survivors when they reach one year from diagnosis. We administer a research tool set, including quality of life, symptom, and physical activity scales. We assess these issues to generate research. We also provide a summary of any outstanding issues both to the oncologist and advanced practice nurse team and to the primary care providers caring for these women, and we make recommendations for follow-up care based on treatments received and synthesized questionnaire results.
Mary McCabe: A large, multidisciplinary steering committee that included patients guided our program planning from the very beginning. Pilot clinics are beginning in prostate cancer, breast cancer, head and neck cancer, lung cancer, and lymphoma. We emphasize three areas in our survivorship program: clinical care, education and information, and research.
The survivorship program is changing the culture of the institution, because you can’t have a survivor-ship focus without starting at the very beginning. We’re starting to discuss survivorship and the follow up plan from the time of diagnosis.
A nurse practitioner is the survivorship expert on a multidisciplinary team, which diagnoses and treats patients and provides follow-up care. The nurse practitioners provide core services. Other services depend on the disease and treatment.
In addition to medical services in the pilot clinics, we’re looking at psychosocial issues. We’re piloting a distress thermometer to evaluate anxiety and depression in our posttreatment patients.
We can retool some services for survivors. For example, our rehabilitation program is increasing services focused on improving the physical functioning of survivors. In other cases, if we can’t make services available in-house, we’re making staff aware of how to refer patients to services in the community.
We’re developing a nursing curriculum for our current nurses and for new nurses coming into the hospital. Currently, they’re focused completely on treatment issues, and we want to get them to think beyond the treatment phase, to survivor-ship issues.
Also in the area of education and information, we’re developing a Web site for patients and families.
In the research area, we’re trying to develop a population of survivorship researchers. We have a database collecting information from our pilot clinics. We’re putting together an Intranet with an EndNote library that’s available for anybody in the institution who wants to access it as background for research studies.
Curtiss: What are the key components in a quality program for long-term survivors?
Pelusi: It’s helpful to develop a treatment plan up front, which can be used by the oncology staff as well as guide the primary care team. At the end of treatment, a plan for survivorship is important. This plan includes the diagnosis, treatment received (drugs, dosages, possible adverse effects and responses), and follow-up plans (office visits, routine cancer screenings, health checkups, follow-up testing). It should also include any potential long-term effects from therapy and potential signs and symptoms of cancer recurrence. It should have a wellness plan that includes exercise, nutrition, emotional and spiritual support, sexual information, and resources.
It’s also important to get the community engaged. Especially in rural areas, communities can set up some programs to meet local needs and also participate in state and local survivor-ship programs and initiatives.
Stricker: The program director at Penn is a PhD-prepared nurse practitioner. A nurse at the core of the model has the ability to synthesize the medical information, create a health promotion focus, target the education needs of both survivors and their health care providers, and link identified clinical issues to a research program.
It’s also critical to have a centralized database. When you hear about clinical problems that survivors are experiencing, the ability to go back to a database and research those issues allows you to move both science and clinical practice forward.
Simonson: I agree with Jody on the value of having a very detailed history of the patient’s treatment and what the patient is at risk for. The patient should be able to take the plan to future health care providers, wherever they are.
A key component of any program is the ability to connect survivors, to let them have some sort of community where they can share information. Researchers can collect data about the survivors in this community and fold it into bigger databases.
The larger community also needs to be aware of survivor issues. In rural and small-town areas, a lot of support comes from local philanthropies and corporations.
McCabe: You need to educate patients about survivorship issues. To do this, you need informed and educated nurses. Education can come from the literature; you don’t necessarily need a large infrastructure. And you need knowledge about community resources so you can build a community for the survivors. Utilize what’s available in terms of education and clinical information for patients and nurses, and then build on and improve it.
Curtiss: Did you do focus groups with survivors before you started your program?
McCabe: Before we decided the configuration of the clinics, we conducted focus groups. A patient advisory group is part of the steering committee that helps us figure out what we ought to be doing.
Simonson: We have a group called Sisters and Science in Action, a collaboration between the local chapters of the Sisters Network and Massey Cancer Center. The women in the group are great activists, and they have been helping us look at survivor issues. They’ve been proactive in bringing in a diverse group of survivors, not just breast cancer survivors and not just African Americans.
Stricker: At the University of Pennsylvania, we did not initially do focus groups. We did a survey of survivors’ needs and issues on the Penn OncoLink Web site. This survey helped to identify issues for cancer survivors. We also conduct intermittent evaluations of our services with survivors who have been through the program.
Nancy Fritsche Eagan: What is the most popular thing with the program participants? What do they love about the program?
Pelusi: What I hear time and again is, “You’re the first ones ever to talk about it, and you’re the first ones to give me something to take home.” Other components that are important are the rehab aspects.
McCabe: We asked our patients, “What would you have liked to have had but was unavailable when you finished therapy?” Sexual health is one thing that most of our patients say was never discussed. They didn’t know how to broach the subject with health care providers. It isn’t just sexual functioning; it’s the whole issue of intimacy and how to reestablish relationships. The sexual health component is what people tell us they find most valuable about our program.
Stricker: The most important feedback from our survivors is that they appreciate the opportunity to voice their concerns and receive guidance on surveillance for problems they may be experiencing or are at risk for based on the treatment they received. They are grateful to be asked about their experience after the acute treatment phase.
Simonson: The Sisters and Science in Action group is excited about being able to educate the community about clinical trials and research. They’re passionate that information will go back not just to the survivors but to their families.
Diana J. Mason: What are you doing to assure long-term financial viability?
Stricker: Lance Armstrong Foundation seed money has gone a long way in getting our program developed and off the ground. This funding is continuing at the present time. Because of the close relationship between clinical practice and research in our program, research funding in conjunction with institutional commitment sustains the infrastructure of the program.
Simonson: We’re not grant funded. We’re an institutional commitment, so we’re part of the budget. We’re meeting some institutional needs. We’re going to be providing primary care for indigent and underserved patients, who are now likely to receive care in the emergency room. We’ll try to make this clinic something the institution sees as a business base.
Cultivating referrals is important. We’re setting up the physicians and nurse practitioners as resources to primary care physicians in the area, somebody to call with questions about survivor care. We’re spreading the word about being able to offer survivors in the community the opportunity to get a great assessment. That’s great advertising and marketing.
McCabe: This is a challenge to the advocacy aspect of nursing, something we’re very good at on behalf of our patients. Cancer survivorship programs are not going to be completely financially viable just from reimbursement. Philanthropy and grants, at least in the near term, are going to be critical for these programs to function and grow.
Public–private sector initiatives are an important way to generate sources of funding. When survivors in the community go back to the work-place, they are likely to find organizations willing to sponsor initiatives. For example, we’ve received funds from a company that employs a Hodgkin disease survivor. The owner became interested in our program because he valued this employee and all she had been through. Throughout the country, there are organizations that have a commitment to community. They may be willing to look at proposals on cancer survivorship.
Pelusi: Local and national grants can help support cancer survivor programs or be woven into other wellness activities.
In a rural setting, funding is going to look very different than in a big university. You will get buy-in from the community, because everyone knows everyone else. There may not be big-dollar people, but there is community commitment.
Components of an Effective Program for Long-Term Cancer Survivors
- consideration of long-term issues and survivorship from the time of diagnosis
- a multidisciplinary approach, including participation by a nurse who can synthesize medical information, target education, and create a health promotion focus
- a treatment plan that
- n documents treatment received (including dosages) and future health risks from treatment
- n has a wellness focus (including exercise and nutrition), which patients can take with them and share with whomever is following them, whether an oncologist or primary care provider
- a comprehensive database, for use in both for research and in identifying survivor issues
- education of nurses, other health care providers, and program staff about survivor-ship issues and resources available within the community
- education of survivors and their families about long-term issues
- involvement of survivors in planning initiatives of the program
- creation of a community of survivors, including a virtual or Web-based community, where they can share information
- involvement of the local community, both for support services and for financial backing