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The large increase in the numbers of children surviving cancer has been hailed as one of the great successes of this nation’s investment in biomedical research. Many children who otherwise would have died within weeks or months of a cancer diagnosis are now living longer, with life expectancies sometimes extending into adulthood. However, it is becoming increasingly clear that extending lifespan and preserving quality of life for survivors will depend on screening for, and the managing of, the potential long-term effects of therapy.

Because childhood cancer survivors often lack information about the treatments they received and the long-term health implications of those treatments, researchers at Texas Children’s Cancer Center and Baylor College of Medicine’s Center for Collaborative and Interactive Technologies in Houston, Texas, in conjunction with the Children’s Oncology Group (COG), are developing an interactive internet resource, called Passport For Care (PFC).

“The Passport For Care is designed to address the fact that survivors of childhood cancer change physicians frequently, may not be aware of the specific therapies they received, and often seek care from physicians who are unfamiliar with their disease and its treatment,” said David Poplack, M.D., director of Texas Children’s Cancer Center and a co-developer of the PFC. “Developing portable and accessible summaries of treatment and potential health risks enables survivors to actively participate in their follow-up care.”

Survivors of childhood cancer are particularly at risk for second malignancies and other long-term complications of therapy, including learning and cognitive deficits; cardiac and cardiovascular problems; growth, endocrine and fertility problems; and hepatic, pulmonary, and renal dysfunction. Recent studies suggest that between two-thirds and three-quarters of survivors will experience at least one of these late effects, some of which can take years to develop.

Consistent medical follow-up for cancer survivors is confounded by several factors: Americans change primary healthcare providers an average of every two years; survivors are often unfamiliar with the details of their treatment history and are unable to accurately share pertinent medical information with their healthcare providers; and primary care providers are often unfamiliar with cancer treatments or with recommendations regarding screening for long-term complications of cancer and cancer therapy.

To address many of these problems, researchers are designing the PFC Web site is being designed to include:

• An end-of-treatment care summary, completed by the treating institution, and available to the survivor, that can be securely shared with providers at the direction of the survivor and used to generate the individualized recommendations for each survivor.
• A guidelines generator that assembles recommendations for follow-up care customized to each survivor, based on his or her treatment history. Generated from the detailed records of surgery, chemotherapy and/or radiation treatments that are included in the database, as well as age and gender information, the PFC will inform a survivor about the likelihood of late effects for which he or she is at risk.
• An alert system that provides survivors with updated changes in their individualized surveillance guidelines as new information becomes available.
• Individualized survivor education materials that are customized to the needs of each patient based on their disease and its treatment. Survivors will be more readily able to access survivorship clinics and other resources that they specifically need.
• An online survivor forum and a section for survivor news and stories.
• Secure Health Insurance Portability and Accountability Act (HIPPA)-compliant system features that ensure privacy and confidentiality.

According to Poplack, “the Passport For Care essentially addresses what the 2003 Institute of Medicine report (Childhood Cancer Survivorship: Improving Care and Quality of Life) indicated was necessary to empower survivors—enabling them to appropriate long-term follow-up. The process of developing an online database for the Care Summary and COG guidelines is on track. Testing will soon begin in the Long-Term Survivor Clinic at Texas Children’s Cancer Center, followed by a pilot at three additional survivorship clinics around the country, with the eventual plan to implement the PFC at all COG institutions.

According to Marc Horowitz, M.D., professor of Pediatrics at Texas Children’s Cancer Center and a co-developer of the PFC, “While the Passport For Care is initially being developed for survivors of childhood cancer, the hope is to ultimately expand the program to adult cancer survivors as well.

Survivorship Care Plans: An Integral Part of Quality-of-Care

Reported by Dorie Hightower
April 11, 2006

Patricia A. Ganz, M.D., a medical oncologist, is a pioneer in the assessment of quality of life for cancer patients. She has focused much of her clinical and research efforts in the areas of breast cancer and its prevention, and was a member of the NCI Progress Review Group on Breast Cancer. Since 1993, she has been the director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center, where she leads the Patients and Survivors Program Area, as well as directs the UCLA Family Cancer Registry and Genetic Evaluation Program. Her other major areas of research include cancer survivorship and late effects of cancer treatment, cancer in the elderly, and quality of care for cancer patients. Ganz recently served on the Institute of Medicine Committee on Cancer Survivorship: Improving Care and Quality of Life.

Why is there a need for cancer survivors to have a survivorship care plan?

Let’s say you have a melanoma [a malignant type of skin cancer] on your leg that is surgically removed. Unlike other surgical procedures, like an appendectomy or hysterectomy where you usually don’t need any further treatment or special follow-up, with melanoma, you could be at risk of recurrence and may be a candidate for further adjuvant therapy. And if you were a woman, and you had melanoma, and it turned out that there were members of your family that had had pancreatic cancer, breast, or ovarian cancer, one might need to think about genetic counseling and screening for those diseases.

Is genetic counseling an example of a recommendation that would be included in some survivorship care plans?

Yes. If I take a good family history from the patient and I find out that her father died of pancreatic cancer at 50 years and his mother had breast cancer at an early age, and they are of Ashkenazi Jewish heritage, that would raise my suspicion that there could be a hereditary susceptibility gene accounting for the multiple cancers in this family. We might want to consider genetic counseling and testing for a mutation in the BRCA1/2 genes, for if the young woman carries a mutation, she would need high-risk screening for breast and ovarian cancer.

What are patients currently given when their cancer treatment is over?

Currently, patients are not given anything. Patients may get some information from their doctor at the time they're diagnosed, and with some common cancers there are a lot of good educational materials. But these materials are not tailored to exactly what went on in that patient's own situation.

How is the record of treatment communicated to the patient and his or her referring physician?

I focus on breast cancer, and when I see a new patient and discuss the treatment plan, I write an initial consultation note that is sent to the referring physician and put in the medical record. But the treatment course for that individual might be six or nine months ahead--they need to finish their chemotherapy, they need to get their radiation, and when they're finally through with that acute phase of treatment, they will often go onto some hormonal therapy, which might last as long as 10 years.

But at the end of that acute treatment phase, we seldom write another formal note that says, “Mrs. Jones received this much of this drug, that much of that drug, this many weeks of radiation. She tolerated it extremely well or she had these side effects and needed to be in the hospital and we're going to have to look out for these late effects.” It's seldom communicated in that kind of transparent way to the patient's primary care physician. Importantly, we do not systematically communicate this to the patient/survivor, who may relocate, change doctors, and be in need of a concise summary of what went on--as well as what to expect in the future.

How would a survivorship care plan be different than that?

Ideally, at the end of treatment there should be a summary in the chart from the point of view of the person who delivered that care and also a forward-looking note. It might say, “Because you have three sisters and they also could be at risk for breast cancer, we need to think about their high-risk status and whether they might want to consider increased surveillance or chemoprevention with tamoxifen.” Or maybe the patient was a young woman who had genetic testing, and she decided to have a bilateral mastectomy as a result of being a BRCA1 carrier, and now she may need to make decisions about whether she should have her ovaries removed. So there may be a lot of post-acute treatment decisions that relate to prevention of new cancers, and screening for recurrence of the disease.

There will also need to be monitoring for late effects that may result from the cancer treatment. In the case of breast cancer treatment, a woman might have menopausal symptoms that are difficult to control, sexual problems, bone loss and osteoporosis, or changes in cardiovascular lipids. So at this point, we would want to provide information about disease prevention, and how to go about sharing the management of these issues to the primary care physician. This is also an ideal time to educate a patient about positive changes in lifestyle—diet, exercise and smoking cessation, for example.

How did you become involved in survivorship issues?

When I started as a medical oncologist at a Veterans Administration hospital in the late 1970s, the hospice movement was just beginning. I established a unit that focused on the entire continuum of cancer patient care--not waiting until the end of life to provide patients the supportive care management (physical, psychological, social, and nutritional services) that hospice provided for cancer patients who were not cured. What we were doing was cancer rehabilitation – helping patients maximize their function and prevent complications. And that led to my working with colleagues in psychology and psychiatry to develop an instrument to measure quality of life after cancer treatment. Then in 1986, after Fitzhugh Mullan wrote his groundbreaking article in the New England Journal of Medicine, “Seasons of Survival,” I was one of 25 people he assembled in Albuquerque, New Mexico to found what has now become the National Coalition for Cancer Survivorship (NCCS); so I'm kind of a pioneer in the survivorship movement. And since that time, I have done a series of research studies that have been focused on outcomes for cancer survivors.

So the time has come for the survivorship care plan to be a standard part of cancer treatment and follow-up?

A survivorship care plan is really a quality of care issue. If you have a survivorship care plan for a 70-year-old woman who has a very small cancer in her breast and has surgery and is put on an aromatase inhibitor, she's going to need monitoring for osteoporosis as well as regular screening for a new cancer in the breast. Those are things her primary care internist can do. And so I see the survivorship care plan as a model--if we can tackle it successfully here for cancer care, then it may be very helpful for other kinds of medical care, as well.

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