The Next Phase of Cancer Care

Survivorship Plans Enhance Patient Health After Treatment

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Public Health Feature — May 2015

Tex Med. 2015;111(5):59-63.

By Kara Nuzback

Treatment doesn't stop when a patient wins his or her battle against cancer. "Overwhelmingly, more patients are surviving their cancer," said Austin oncologist Debra Ann Patt, MD, a member of the Texas Medical Association's Committee on Cancer and outcomes researcher at Texas Oncology.

The success of cancer treatments brings new issues to light, including how physicians — both specialists and primary care physicians — can support patients once active treatment is over. Survivor care plans, though not as common as they should be, are an important part of any survivor's aftercare, Dr. Patt says. The plans include a summary of the patient's diagnosis and treatments, as well as a course of action for screenings, office visits, and lifestyle recommendations.

But it's not always easy to get a patient to change his or her lifestyle, and sometimes the lines of communication are absent between oncologists, who create the plan, and family physicians, who play a major role in seeing the plan through.

"Continuing to collaborate and enforce the care plan is important," she said. "That's the best way [physicians] can influence good health." Dr. Patt says the survivorship care plan is still a relatively new tool, but one that primary care physicians should expect to receive from their patients' oncologists and for which they should carve out time to discuss with their patients. 

"Use has gone up. It's still not happening with every patient," she said.

In 2005, the Institute of Medicine issued the report From Cancer Patient to Cancer Survivor: Lost in Translation, which examined the consequences of cancer and its treatment.

"Psychological distress, sexual dysfunction, infertility, impaired organ function, cosmetic changes, and limitations in mobility, communication, and cognition are among the problems faced by some cancer survivors," the report stated. It goes on to say physicians can help patients manage the after-effects of cancer treatment — or avoid them completely — if the patient's oncologist provides her or him with a survivorship care plan. 

According to the report, a survivorship care plan should include:   

  • Cancer type, treatments received, and potential consequences;
  • Specific recommendations for follow-up care;
  • Recommendations for prevention and maintaining health and well-being;
  • Information on legal protections regarding employment and health insurance; and
  • Available psychosocial services in the community.  

Plans Can Reduce the Risk of Recurrence  

Cancer treatment is tremendously complex, and it can involve a vast array of surgeries, therapies, and prescriptions.

"At some point, patients kind of feel like deer in headlights," Dr. Patt said. When survivors come out of the whirlwind of treatment, it is imperative that specialists and primary care physicians coordinate follow-up care and talk to patients about their survivorship care plan, including setting expectations for treatment side-effects, she says. 

Dr. Patt says survivorship care plans are part of recognizing the whole spectrum of cancer care and assessment.

"It's really a paradigm shift in how we think about cancer care," she said.

Dr. Patt says many of her patients are breast cancer survivors, so the schedule of follow-up care is often the same. She says in the first two years after active treatment is over, she schedules office visits every three months; for three to four years after treatment, she sees the patient every four months; and five years after treatment, she sees the patient every six months. After six years, she schedules annual visits, she says.

However, the severity of the cancer can impact follow-up care, she says. Dr. Patt says a patient with Stage 1 breast cancer may experience side-effects from endocrine therapy, while a patient recovering from Stage 3 breast cancer has to deal with an increased risk for recurrence — these factors alter and personalize the survivor care plan.

Several national organizations offer guidelines and templates for survivor care plans, including Livestrong and the American Society of Clinical Oncologists (ASCO). (See "Model Survivorship Care Plans.")

"They are very similar in that they try to increase a patient’s health literacy, identify his or her personal risk and follow-up plan, and assess other needs associated with disease and treatment," Dr. Patt said. Those other needs can include addressing depression, anxiety, and other social problems that can stem from cancer diagnosis, including problems of a more tangible nature. "It can be financially crippling to go through a diagnosis," she said. Even patients who have insurance are often not able to work during active treatment, she adds. 

Another common challenge for cancer survivors is maintaining overall health, including diet and exercise. Dr. Patt says patients' physical activity decreases drastically during treatment. 

"It's really shocking after cancer treatment how debilitated people are," she says. She refers patients to programs that help them regain strength and stability like the Survivorship Training and Rehab (STAR) Program, which is led by certified oncologists.  

Dr. Patt also recommends the 12-week Livestrong at the YMCA program, designed to help adult cancer survivors improve their strength and quality of life. 

These specialized exercise programs can empower patients to care for themselves, as well as live better lives and reduce their risk of recurrence, Dr. Patt says. She says one of her patients received a metastatic kidney cancer diagnosis several years ago, but has learned to manage the disease.

"He runs 100 miles at a time," she said.

Dr. Patt also says — contrary to the cancer patients seen in movies and on television — weight gain is a common side-effect of chemotherapy treatment, especially among breast cancer patients. Dr. Patt is the medical director for Healthcare Informatics at McKesson Specialty Health and the U.S. Oncology Network — a partner of Texas Oncology — where she leads a team of physicians and researchers in health economics and outcomes research. She recently focused her research on secondary malignancies, mental health, and weight changes among cancer survivors. She says a study she presented at the ASCO Quality Care Symposium showed one-third of the cancer survivors she studied were obese.

"It's a risk factor for recurrence," she said. Exercise reduces the risk of recurrence for some cancers, including colon and breast cancer, and, "It's likely to improve your survival," she added.

As with any diet and exercise plan, patients sometimes lose motivation, Dr. Patt says. The best thing physicians can do is continue to encourage an active lifestyle.

"Patients know they are going to talk to me about it at every visit," she said. If patients know their physician will ask about their exercise habits, it can influence their behavior, she says. (See "The Role of Obesity in Cancer Treatment and Outcomes.")

Special Needs of Pediatric Survivors

While the concept of survivorship care plans for adults was developed in the last 10 years, post-cancer treatment plans for pediatric cancer survivors is a more seasoned concept.

Pediatric oncologist Joann Ater, MD, heads the Children's Cancer Hospital's Childhood Cancer Survivors Clinic at The University of Texas MD Anderson Cancer Center in Houston. The clinic helps pediatric cancer survivors overcome the physical, psychological, and developmental problems that may result from cancer or its treatments. 

According to its website, the clinic accepts anyone diagnosed with cancer before age 21 and who has been out of treatment and cancer-free for at least two years, regardless of the patient's age. Dr. Ater says some of the clinic's patients are in their 50s. 

She says one of the primary services at the clinic is educating patients so they can explain their own health problems and risks to physicians in the future. 

The clinic provides patients with a "passport," which Dr. Ater says is similar to a survivorship care plan, but is less focused on the type of cancer and more focused on the treatments the patient received.

Dr. Ater says cancer treatments can have far more detrimental and lifelong effects on children than on adults because children's bodies are still developing. She says pediatric cancer patients who take Adriamycin, for example, can develop cardiomyopathy 20 years later. Radiation treatments can decrease children's intellect and cause endocrine issues, she adds.

"Most adults treated for cancer were already functioning adults … they're already fully developed, often employed, and living a normal life," Dr. Ater said. But for children, she said, "As they grow, they manifest more of the damage that was done." 

According to the article, "Clinical Ascertainment of Health Outcomes Among Adults Treated for Childhood Cancer," published in the June 2013 issue of the Journal of the American Medical Association, by the time a patient reaches age 45, he or she has a 95-percent chance of suffering from a chronic health condition and an 80-percent chance of suffering from a disabling or life-threatening chronic condition.  

While children who survive brain tumors and bone tumors are at a high risk for lifelong disabilities, Dr. Ater says, many leukemia patients recover incredibly well. 

"Their risk of having problems later … is relatively low," she said. Still, the challenge comes with finding a physician in the community who will understand the pediatric cancer survivor's needs and provide quality care for the patient into adulthood. Dr. Ater says that is why the clinic aims to empower its patients with knowledge about their disease. 

She says primary care physicians should talk to patients who are pediatric cancer survivors and ask for a summary of their treatment, as well as recommendations from their oncologist. 

TMA is offering the continuing medical education course, "Primary Care Update: Childhood Cancer Survivorship," until July 15. The course informs physicians about the prevalence of childhood cancer in Texas and helps physicians assess patients for risks of specific late effects of cancer treatment. 

Communication Aids Care

Another problem with caring for cancer survivors arises when the lines of communication between oncologists and primary care physicians are lacking. MD Anderson Cancer Center Vice President of Health Policy and Professor of Clinical Cancer Prevention Lewis Foxhall, MD, says physicians work well individually, but "we tend to be siloed," which doesn't aid adequate discussion among health care professionals. "We have a fragmented health system in this country," he said. 

MD Anderson Cancer Center recently published a textbook on survivorship management. Advances in Cancer Survivorship Management aims to disseminate models of surveillance, screening, education, and psychosocial counseling. Dr. Foxhall, an editor of the text, penned a chapter regarding the need for improved communication between primary care physicians and oncologists. 

In the book, Dr. Foxhall writes, "… delivery of high-quality care for cancer survivors can be hindered by poor coordination of care. …" He describes the importance of collaboration to create a survivorship care plan.

The care plan should include an overview of the course of the patient's disease, the treatment, and a plan for follow-up care, including surveillance and prevention, Dr. Foxhall writes.

Dr. Foxhall writes that barriers to survivorship care plans include time — the physician must locate and abstract the relevant data to complete the patient’s disease and treatment summary — and the fact that the task is not covered by health insurance. Physicians must also explain the care plan to the patient, which can be time-consuming with no financial compensation. Dr. Foxhall says clinicians and the patient should decide who will provide which parts or all of the recommended components of survivorship care. 

TMA offers DocbookMD free to its members. The HIPAA-compliant smartphone application enhances collaboration among physicians by allowing them to send secure messages and photos to one another instantaneously, as if they were sending a text message. 

Dr. Foxhall says he is in the process of applying for a grant from the Cancer Prevention and Research Institute of Texas (CPRIT), in collaboration with TMA, that would improve survivorship service delivery.

The grant would cover some of MD Anderson’s telementoring program designed to empower family physicians to better care for cancer survivors. The program, which MD Anderson is now testing with a select group of practices, promotes interactive discussions between primary care physicians and experts at MD Anderson via regular teleconferences during which experts present new information.

Dr. Foxhall says the program boosts clinicians’ confidence in treating cancer survivors and provides a chance for physicians to share success stories and build best practices.

"The survivors are already in their practices, and it's really about trying to do a better job of managing their care," he said. "If it's productive, we hope to expand it in the future.”

Dr. Foxhall also points out in Advances in Cancer Survivorship Management, "Although the number of survivors is continuing to grow, concerns have also been voiced concerning the projected shortage of both oncologists and primary care physicians."

He says the telementoring program would — on a larger scale — boost the number of family physicians who are comfortable treating cancer survivors, so oncologists could focus primarily on treating acute cancer cases. 

"It's a challenge as we see more and more survivors out there," he said. "All the parties involved need to feel comfortable they are giving and receiving the best care they can."

SIDEBAR

Model Survivorship Care Plans

Minnesota Cancer Alliance
Livestrong
Journey Forward 
American Society of Clinical Oncology

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 SIDEBAR

The Role of Obesity in Cancer Treatment and Outcomes

More than 25 percent of Texas adults are considered obese, meaning they have a body mass index of 30 or greater. Obesity is an established cancer risk factor, accounting for 14 percent to 20 percent of cancer mortality nationally and a major hindrance in the treatment of cancer. Teaching, counseling, and talking to patients about their weight and its effect on their cancer treatment and potential outcome are of the utmost importance.  

TMA is offering a new on-demand webinar continuing medical education course, "The Role of Obesity in Cancer Treatment and Outcomes," by Lewis Foxhall, MD, of The University of Texas MD Anderson Cancer Center in Houston. The course is designed to help you learn the role of obesity in cancer treatment, navigate how to counsel and care for patients who may be affected by obesity and cancer, and determine patient-centered clinical approaches to screen for and manage obesity.

Thanks to a grant from the TMA Foundation, this course is available free to the first 20 physicians who visit www.texmed.org/CancerTreatment and use coupon code STOPCANCER.

For questions or assistance, contact the TMA Knowledge Center at (800) 880-7955 or by email.