UCLA-LIVESTRONG Cancer Survivorship Center of Excellence Update for Survivors of Childhood and Adult Cancers
Patricia A. Ganz, M.D., Director of the Division of Cancer Prevention and Control Research and Director of the UCLA-LIVESTRONG™ Survivorship Center of Excellence Jonsson Comprehensive Cancer Center, medical oncologist and Professor of Medicine and School of Public Health
Jacqueline Casillas, M.D., Assistant Professor of Medicine Department of Pediatrics David Geffen School of Medicine, pediatric oncologist and Associate Program Director of the UCLA-LIVESTRONG™ Cancer Survivorship Center of Excellence
This is a summary of a lecture that was presented on May 8, 2007.
More than 1 in 3 Americans will be diagnosed with cancer in their lifetime. Currently there are over 10 million Americans who have a personal history of cancer. As the population is aging, with larger numbers of people in the over 60 age group, there will be more people with a cancer history and increasing numbers of those who are long-term survivors of the disease.
The Institute of Medicine (IOM) has become increasingly interested in the survivor population and recently (2006) wrote a report which was entitled, “From Cancer Patient to Cancer Survivor: Lost in Transition.” It articulates some of the needs of this group of people who are post-treatment and without a recurrence. The IOM found that survivorship care is a neglected phase of the cancer care trajectory. There are few guidelines regarding follow-up care and some of the most significant concerns for this group include cancer recurrence, second cancers and late effects caused by cancer treatment. Many of the providers of care lack knowledge about survivorship care because there is a lack of education and training. The IOM also notes that survivors may be unaware of risks and have no plan for follow-up when they leave their treating oncologists. As a result, opportunities to intervene may be missed. Cancer care is often not coordinated with primary care physicians, and thus, communication may not take place about follow-up issues. In addition, we do not know which models for care are the best because they have not been researched.
Cancer is different from other chronic diseases and presents some challenges to the patient and the medical care system. Cancer treatment is highly complex, involves multiple modes and includes many different specialists who may or may not communicate well with each other. The treatment is also very toxic and expensive. Coordination of care is often lacking and treatment occurs away from the primary care environment. One of the biggest challenges is the limited amount of systematic research on the late effects of cancer therapy. When follow-up plans are made for cancer survivors, they are usually focused on surveillance for recurrence but not necessarily on the prevention or early detection of other issues or secondary diseases. Also there is sometimes an attitude that the patient should be “happy that they are alive” and thus, not upset about the consequences that they might suffer following cancer treatment. For example, fertility issues are sometimes neglected and patients are left to deal with significant loss because this is not seen as central to surviving cancer. Quality of life needs to be an integral part of all aspects of care from the point of diagnosis through survivorship.
Follow-up care for cancer is a challenge because patients are seen on average by three different specialists and treatments are often given across time and in a variety of settings including outpatient settings, inpatient settings and specialized treatment facilities. These different treatment locations create multiple medical records, and thus, tracing back what actually happened to a patient can be especially challenging as time goes on. There have been a variety of suggestions to improve communication including integrated electronic medical records, but even these do not solve all of the problems because patients are often seek specialists from more than one institution. If it is difficult to track what happens to patients while they are in treatment, and it raises the question about what happens once treatment ends. It becomes potentially even more difficult.
Young Adult, Adolescent and Pediatric Cancer Survivors
There have been an increasing number of adults who were minors at the time that they were diagnosed with cancer. In the early 1970’s, survivors made up approximately 1.5% of the US population. In 2001 this number has doubled to 3.5% of the population. Of the 10 million survivors in the United States, about 300,000 are individuals who were of minor age at the time of diagnosis.
One of the big concerns for individuals who are diagnosed and treated for cancer at an early age are the late effects that may develop as a result of the treatment. A late effect is defined as any chronic or late occurring outcome, physical or psychological, that persists or develops beyond five years from the diagnosis of cancer. Some late effects are easily identifiable because they are visible, such as a cosmetic deformity due to an amputation. Other late effects may only be identified through screening tests such as hypothyroidism or infertility as examples. Late effects may be related to specific treatment regimens. Pediatric oncology patients have been treated with standardized protocols and as a result some of the associations of late effects and specific treatments are known. For example, anthracycline chemotherapies such as adriamycin as well as radiation can cause heart problems and screening recommendations include echocardiograms and electrocardiograms. Bleomycin and/or radiation to the lungs can cause lung problems. Epidophyllotoxins (e.g. VP-16) is associated with a leukemia caused from the chemotherapy and screenings should include annual history, physical and complete blood count.
Late effects include both physical and psychological changes and it is estimated that two thirds of childhood cancer survivors experience at least one late effect. Unfortunately, survivors typically have more than one late effect. It is estimated that on quarter of survivors will have a severe or life-threatening late effect.
Systematic ongoing follow-up is required for screening of late effects. The goal is to detect late effects early and to provide early interventions for potentially serious late-onset complications. In addition, counseling of these survivors regarding what they can do to promote risk reduction for health problems that commonly present during adulthood is another important part of survivorship care.
In addition to systematic follow-up, patients need to have good symptom management and palliative care integrated in their survivorship care. Palliative care is care or treatment that concentrates on reducing the severity of disease symptoms particularly if there is not a curative medical treatment. The goal is to prevent and relieve suffering and to improve quality of life for people who have complex illnesses. The focus should always be on the most severe and prolonged symptoms. Symptom management/palliative care can be for both physical and psychological symptoms. We need to look beyond the cures and address the multifaceted needs of those living beyond cancer.
Some of the kinds of symptom management that may be necessary include chronic pain. Chronic pain treatment strategies include medications, CAM (complementary and alternative medicine) approaches such as acupuncture, and psychological and mind/body techniques that help the person to develop effective coping strategies. Body image is another commonly affect arena. Physical activity programs, psychosocial group based interventions and referrals to specific psychotherapists can be especially helpful.
It is important to think about how to maintain health, wellness and health insurance. This requires education about how and what to do. When young people are the survivors, they need to develop strategies for living well. They need to be introduced to information about heart disease prevention. This usually involves education about how diet and exercise can promote greater wellness. Education about appropriate screening for other cancers and when these screenings should begin are also important for diseases such as breast cancer, cervical cancer and colon cancer. One area that is often overlooked is anticipatory guidance counseling.
Young adult cancer survivors require special counseling about the importance of maintaining their health insurance and what kinds of strategies might be helpful. For example, going to college and staying in college full-time may allow young adults to stay on their parents’ health insurance plans for longer periods of time. When not in school, seeking employment in a large company that provides health benefits and does not exclude pre-existing conditions is something that most young people may not understand. In addition, once a person has health insurance whether on their own policy, an employer’s or a parent’s, they need to make sure that they never let that lapse. The Consolidated Omnibus Budget Reconciliation Act (COBRA) has provisions for individuals to maintain their health insurance (usually at a higher cost). When changing jobs, making sure that they maintain their health insurance through COBRA or converting to another policy is essential to avoid having to go through the underwriting process in which denial of coverage could be a problem.
Survivorship Care Plans – For All Individual with a Personal History of Cancer
One of the proposals to help survivors with their follow-up care is to develop a “survivorship care plan.” The purpose of this is to summarize and communicate what transpired during cancer treatment. The goal would be to have the treating physician create this summary at the end of treatment. It should describe known and potential late effects of cancer treatments with expected time course. It is also a means to communicate with the survivor and other health care providers what has been done and what needs to be done in the future with regard to care and surveillance. The survivorship care plan can also include information about how to promote a healthy lifestyle to prevent recurrence and reduce the risk of other medical conditions.
The key elements of a “Survivorship Care Plan” include:
- Specific tissue diagnosis and stage of disease
- Initial treatment plan and dates of treatment
- Toxicities during treatment
- Expected short- and long term effects of treatment
- Late toxicity monitoring that is needed
- Surveillance recommendations for recurrence or second cancers
- Who will take responsibility for survivorship care, e.g., oncologist, primary care physician, etc.
- A listing of psychosocial and vocational needs
- Recommended preventative behaviors and or interventions
Guidelines developed by the Children’s Oncology Group are available for survivors and providers atwww.Survivorshipguidelines.org.
UCLA-LIVESTRONG™ Survivorship Center of Excellence
The UCLA-LIVESTRONG™ Survivorship Center of Excellence is one of seven programs with this designation around the United States. It serves the most populous and diverse county in the United States. There are 9,519,338 residents with 72% being 18 year and older. Almost 10 percent are 65 years and older. It has a wide ethnic distribution with 48.7 % white, 9.8 % Black or African American, 44.6% self-identified as Hispanic or Latino, 11.8% Asian. The UCLA-LIVESTRONG™ Survivorship Center of Excellence sits within the Jonsson Comprehensive Cancer Center at UCLA which has been identified as the best cancer center in the west. The patients and survivors program of the Jonsson Cancer Center has as its major goal the reduction in avoidable morbidity and mortality for cancer patient survivors and their family members/care givers through the conduct of innovative research focusing on the quality of life and the quality of cancer care outcomes for patients and survivors. The UCLA-LIVESTRONG™ Survivorship Center of Excellence facilitates development and coordination of translational clinical programs that will improve survivorship care and focus on the development and evaluation of diverse models of cancer survivorship health care delivery.
Within the UCLA-LIVESTRONG™ Survivorship Center of Excellence is a special program called “VITA” which stands for “Vital Information and Tailored Assessment.” It is the clinical care arm of the survivorship center. In this clinical program, individuals with a personal history of cancer can obtain a survivorship consultation. They will meet with a physician with expertise in this area, a nurse practitioner and a health psychologist or oncology social worker (from the Simms/Mann – UCLA Center for Integrative Oncology also known as the Ted Mann Family Resource Center). All of these individuals have experience and expertise in survivorship needs and their goal is to assess the individual and help them to obtain the information and resources they need to live with the greatest degree of health and wellness. Prior to the consultation oncologic medical records will be obtained, and pertinent information will be abstracted which will allow the team to construct a “Survivorship Care Plan” which can be used by primary care physicians. It is also a place where long-term follow-up care is provided for childhood cancer survivors. Both adult survivors and childhood cancer survivors can receive consultations and coordination of their survivorship care. Symptom management can be addressed in all groups of individuals with a personal history of cancer. Referrals will be made to assist in integrative medicine approaches for wellness as well.
Individuals who participate in VITA will also be introduced to current studies on cancer survivorship and can elect to participate. For example, current studies exist for individuals with a history of breast cancer and symptoms of fatigue and/or problems with sleep. Cognitive changes after breast cancer treatment are also being studied and quality of life in ovarian cancer survivors. Participants can enroll in the UCLA Cancer Survivor Registry which will create the opportunity to be contacted in the future when new studies come up that may apply to them. This creates a vehicle for individuals to help produce the research that is needed to better inform all of us about the needs and interventions for individuals with a history of cancer.
This is a new model of care that is being offered at UCLA and it is hoped that patients and physicians will seek out this specialized center to help provide guidance for improved functioning and quality of life for all individuals with a personal history of cancer.
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