Targeting the educational needs of cancer survivors takes many shapes
Targeting the educational needs of cancer survivors takes many shapes
LIVESTRONG provides examples of program development
Clinical survivorship service is a new model of continuing care for cancer patients. The completion of treatment is not the end, and structured services are necessary to help a burgeoning population of cancer survivors deal with a multitude of issues that often are not addressed, says Marci Campbell, PhD, co-director of the Carolina Well Survivorship Program at the University of North Carolina at Chapel Hill Lineberger Comprehensive Cancer Center.
The Carolina Well Survivorship Program is part of a network of survivorship centers at leading medical institutions and their community affiliates that provide "essential direct survivorship services and increase the effectiveness of survivorship care through research, the development of new interventions, and sharing of best practices."
LIVESTRONG Survivorship Center of Excellence Network members are selected by an appointed steering committee through a review process. The network is part of the Lance Armstrong Foundation, located in Austin, TX.
According to Campbell, the Carolina Well Survivorship Program determined which services to offer by surveying 200 patients and caregivers at the cancer center's treatment clinics. There are categories of services people say they need, says Campbell. For example, they need to have some knowledge about what to do after treatment is over.
Patients need a treatment summary at the end of active treatment and a survivorship care plan. Also, they need help implementing that care plan, says Campbell.
"There is a wide range of education and support services that are important for cancer survivors when they are in that post-treatment phase," says Erin E. Hahn, MPH, program coordinator at UCLA-LIVESTRONG Survivorship Center of Excellence in Los Angeles.
For example, patients want to know about appropriate surveillance, which includes how often to schedule routine follow-up appointments and whether they should see their primary care physician or oncologist. Also, they should have a list of signs and symptoms, such as certain types of pain, that would trigger a call to their physician, says Hahn.
Education about what to expect psychologically in the post-treatment phase is important as well, says Hahn. People can feel lost once they have completed treatment, not knowing what to do next, and this heightens anxiety.
Often, patients have symptoms that started during their treatment phase that they are having difficulty managing, says Hahn. They need help with strategies for such problems as chronic pain, anxiety, and depression.
Cancer survivors need a lot of information, agrees Barbara Andersen, PhD, program director of the Survivorship Center (member of LIVESTRONG excellence network) at The Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute in Columbus, OH. When diagnosed patients need information in order to cope with a cancer diagnosis, they need details on their cancer treatments; and when treatment ends, cancer survivors need to know what type of surveillance routine they should follow, she explains.
Information on health and wellness also is needed, as well as how to achieve a healthy lifestyle, she adds. This would include details on diet and exercise for overall good health.
Information about psychosocial issues and how to address them through counseling and other services is vital. Some people have difficulty coping with the anxiety, distress, and depression that may continue following treatment. This impacts their life in many ways, including a delay in returning to work, taking more sick days once they are back in the workforce, and causing difficulties in personal relationships, says Andersen.
The amount of education and support needed can depend on the stage of a person's cancer and type of treatment, says Meghan Newcomer, MPA, coordinator of the Cancer Survivorship Initiative Office of The Physician-In-Chief at Memorial Sloan-Kettering Cancer Center, which has a LIVESTRONG survivorship program.
It is important to address both physical effects and psychosocial effects, she says. Physical effects might be pain, neuropathy, osteoporosis, and sexual health, includingfertility. Emotional effects might be difficulty communicating with family members, fear of cancer reoccurrence, uncertainty, employment difficulties, insurance problems, and need for financial assistance.
"For some people, cancer has a minimal impact, and for others, it impacts every area of life," says Newcomer. Frequently, the impact depends on the type of cancer and its stage, type of treatment, and the age of the cancer patient at diagnosis, she adds.
More than one delivery method
What is important to note is that there is more than one way to deliver survivorship care, says Hahn. The UCLA survivorship center has three partner institutions that offer different programs, based on such factors as finances and patient population. They include a large county hospital, a primary care medical group, and a community hospital.
All three have decided it is important to provide information about what to do post-treatment. Some started with breast cancer patients and are using evidence-based guidelines for follow-up care available through the American Society of Clinical Oncology in Alexandria, VA.
"They rely on the guidelines to start the conversation with patients, filling them out, and giving the patient a copy," says Hahn.
Also, the institutions are providing patients with a list of resources available within their organizations and within the surrounding community. For example, the community hospital is not able to offer a lot of support groups or one-on-one therapy, so it has partnered with the local chapter of the Cancer Support Community headquartered in Washington, DC.
One survivorship program is conducted via telephone and mail, because the medical facility did not have the resources to do a visit with a nurse or physician. The program is working well, adds Hahn.
To start a survivorship program, look at the literature, Hahn advises. Also, talk to providers within your institution, and survey patients formally or informally, she adds. Be realistic about financial restraints and work with community groups as well as patients to determine how to fulfill patient needs, says Hahn.
Providing resources to read and videos to watch can be helpful for both patients and caregivers. Hahn says that Patricia Ganz, MD, the program director at the UCLA survivorship center, did a study of a post-treatment video for breast cancer patients where women talked about their recovery. The study found that those who watched the video had an accelerated return to their normal quality of life. (The video is titled "Moving Beyond Breast Cancer" and is available at no charge from the National Cancer Institute, says Hahn.)
Conducting a needs assessment is the best way to determine how to develop a survivorship program, says Newcomer. In New York City, she said the needs of cancer survivors differ, depending on the neighborhood in which they live. For example, in poorer neighborhoods, it is not support groups people want, but more concrete services, such as direction on obtaining financial assistance.
Cancer can impact quality of life at diagnosis, during treatment, and in the post-treatment phase, says Hahn. People can continue to feel apprehensive and frightened if they have new symptoms to deal with that are a result of the cancer treatment. For example, certain chemotherapy treatments can push women into premature menopause. Sometimes the cancer has a positive impact on a person, causing them to appreciate life more.
"Patients and family members need to know that things don't just bounce right back; people talk about a new normal," says Hahn.
Support services help people adjust to a new normal, whether offered through the hospital, medical group, community, or national organizations.
It is important to know there are a variety of issues to address when treating cancer survivors. These range from late physical effects, such as chronic fatigue, to long-term psychosocial effects from treatment, and financial burdens. Just as the problems can take many different forms, the solutions will differ depending on each patient's situation, says Hahn.
Sources
For more information, contact:
Barbara Andersen, PhD, Program Director, The Ohio State University Comprehensive Cancer centerJames Cancer Hospital and Solove Research Institute, Survivorship Center, Columbus, OH. Telephone: (614) 293-6401. E-mail: [email protected].
Marci Campbell, PhD, Co-director, Carolina Well Survivorship Program at the University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center, Chapel Hill, NC. Telephone: (919) 966-7230. E-mail: [email protected].
Erin E. Hahn, MPH, Program Coordinator, UCLA-LIVESTRONG Survivorship Center of Excellence, Los Angeles, CA. Telephone: (310) 825-9781. E-mail: [email protected].
Meghan Newcomer, MPA, Coordinator, Cancer Survivorship Initiative, Office of The Physician-In-Chief, memorial Sloan-Kettering Cancer Center, New York City, NY. Telephone: (212) 639-3947. E-mail: [email protected].
Lance Armstrong Foundation, LIVESTRONG Survivorship Centers of Excellence, 2201 E. Sixth St., Austin, TX 78702. Website: www.livestrong.org.
Clinical survivorship service is a new model of continuing care for cancer patients. The completion of treatment is not the end, and structured services are necessary to help a burgeoning population of cancer survivors deal with a multitude of issues that often are not addressed, says Marci Campbell, PhD, co-director of the Carolina Well Survivorship Program at the University of North Carolina at Chapel Hill Lineberger Comprehensive Cancer Center.Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.