Helping Survivors Navigate Their Way to Better Health Post Cancer
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AONN+ Conference Highlights, Survivorship
Helping Survivors Navigate Their Way to Better Health Post Cancer
Mandi Pratt-Chapman, MA, Associate Center Director, Patient-Centered Initiatives & Health Equity, GW Cancer Center, Washington, DC
The number of US cancer survivors hovers around 12 million today and is projected to grow to 20-million-plus by 2020, creating a critical need for focused patient navigation–oriented strategies for said survivors.
To better understand how to address survivorship, it is imperative to understand terms such as “patient navigation,” defined by the Commission on Cancer (CoC) as “individualized assistance offered to patients, their families and caregivers, to help overcome barriers to care, whether through the healthcare system or the environment, and also to facilitate timely access to care from diagnosis through all phases of the cancer experience,” said Mandi Pratt-Chapman, MA, associate director for community programs for the George Washington (GW) Cancer Institute, Washington, DC.
This individualized assistance is necessary for the reported 62% of adults diagnosed with cancer who now live more than 5 years and the 75% of children with a cancer diagnosis who live beyond 10 years, according to Pratt-Chapman.
“There are a growing number of patients in the system and a fragmented system that they’re trying to navigate,” Pratt-Chapman says. “Despite advances that the numbers of survivors represent, along with better treatments and diagnoses, many individuals still slip through the cracks. As a result, there is higher cancer incidence, mortality, and lower survival rates among certain populations.” Hence, the birth of navigation. While defining patient navigation is clearcut, defining survivorship is a bit murkier – and more individualized, she said.
Officially, the National Coalition for Cancer Survivorship defines survivorship from the point of diagnosis and through the balance of life. Polls and surveys from the American Cancer Society and LIVESTRONG Founda tion have found that survivors have increasing expectations for good quality of life, longer life, and a need to address effects that occur after treatment ends.
With such definitions in mind, Pratt-Chapman shared goals of the National Cancer Survivorship Resource Center, which is a collaboration between the American Cancer Society and GW Cancer Institute: identify gaps in information content and delivery channels for survivors and assess the nationwide surveillance system capacity to longitudinally monitor cancer survivor outcomes. The center provides direct survivorship navigation and support as well as training around survivorship for patient navigators.
Pratt-Chapman also addressed an overview of standards relevant to the survivorship discussion. The CoC patient navigation standard requires that each institution accredited by the CoC conduct an assessment of barriers to care for cancer patients. It has to include all cancer types in the needs assessment. The Cancer Committee needs to evaluate and report on the progress of the program annually, and that report needs to address health disparities identified, navigation process, populations served, barriers identified, and metrics used to track your program.
EXAMPLE OF A SURVIVORSHIP CLINIC
Putting those standards into practice in clinic form, Chi H. Kim, MD, an internal medicine physician and GW associate professor of medicine, discussed the cancer survivorship clinic at the GW Medical Center. She was appointed to initially help launch and navigate the cancer survivorship clinic, called the “Thriving After Cancer” program, which involves suborganizations of the GW Medical Center such as the GWU Hospital and the Medical Faculty Associates, along with the GW Cancer Institute.
The clinic can provide screening, diagnosis, and treatment of cancers, psychosocial aspects of patient cancer needs, and can address cancer survivorship. It features a multidisciplinary survivorship clinic approach with a nurse practitioner, an internal medicine physician, along with a pediatric oncologist. There’s a patient navigator (social worker), mental health assessment provided by Lorenzo Norris, MD, and residents, a dietitian, and a nutritionist. There’s also an exercise program called “TAC Fit,” where patients receive a personalized fitness assessment and goals.
“We wanted to really improve the follow-up of these patients, since a lot of them were lost to follow- up care,” she said. “The survivorship care plan was a really key component. At GWU, we have a two-page survivorship care plan detailing diagnosis, what age, actual dates, surgeries, chemotherapies, including their dosages, etc, as well as follow-up care.”
“It empowers the patient so they know what they need to pursue, but furthermore, they can provide this to their future physicians or their primary care doctors who can also help them to navigate and screen through these late effects for the rest of their lives,” Dr Kim said.
Prior to the patient coming to the clinic, Dr Kim and colleagues do what is called a huddle. “[Everyone] gets together and we actually sit down and talk about each patient, and point out their unique history, what their medical needs are,” she says. “Then we can talk about our game for each patient.”
Before the patient leaves, the navigator provides the patient with the survivorship care plan, as well as a packet about just survivorship resources, not to mention a future follow-up with the patient to encourage compliance.
One of the challenges or threats to such survivorship plans is the financial return on investment, which, according to Dr Kim, may be little to none. “It may not be sufficient to cover our program costs, but again, we need to look beyond the financial and see the clinical need.”
Dr Norris, director of consult liaison psychiatry at GW, worked with Pratt-Chapman and others at Medical Faculty Associates in setting up a psychosocial service for cancer survivors.
To have a successful program, “Ultimately, you’re trying to change the culture. We’re trying to implement a new paradigm of cancer as a chronic disease that is treatable,” said Dr Norris.
Consider developing a 5-year plan with a concise mission statement. “The mission statement will put the boundaries on what it is that you are trying to do. It should be unique to whom you are, the resources that you have in place,” he said.
Program goals must be developed. In GW’s case, the goals were to improve survivorship posttreatment quality of life, provide psychiatric support to all GW survivorship programs, train and teach residents, and increase collaboration between various providers of survivorship care.
“Once you’ve started to get an idea of your own strengths, your own capacity, then you have to consider the needs assessment,” Dr Norris said. You can use standardized questionnaire, poll patients, or spend a day or two with an oncologist or a support group from a survivorship perspective.
After the needs assessment, determine an effective way to reach highest risk populations. “We had to figure out a way to get less fragmentation, more support in treatment for high-risk. We had to make it easier for clinicians to access us 24/7 if we had a patient that was suicidal,” he said.
Next, the market assessment, through targeted tactics, helps carry out your goals. In GW’s case, they use strategies such as acute crisis intervention, time-limited focus (8 sessions), focused pharmacotherapy, building and sustaining relationships, management of psychiatric needs, risk stratification (survivorship care plan), and referral to a social worker or navigator-led support group.
The support group touches on a need of many survivors – distress. “Most distress only needs guidance. Distress gives you a common language in which to talk to clinicians about the psychosocial needs of patients,” he said. “If you set it up correctly, distress leads to referrals.”
Lastly, when setting up such survivor-focused services, Dr Norris emphasizes, “Do not start these services if you are working alone in asylum. This level of extensive service, you have to have some type of coronation of working with someone. Also, be very patient, very, very patient.”
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