© Oxford University Press 2006.
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Living Well Post-Cancer: Care Planning for Survivors
The good news is that more cancer patients are becoming cancer survivors. The bad news is that they aren't always getting the preventive noncancer care they need to stay healthy.
Now a series of research studies and a recent Institute of Medicine (IOM) report are shining a spotlight on a relatively new issue for oncologists: how best to care for the estimated 10.5 million cancer survivors in the United States.
Cancer survivors have specialized needs beyond the obvious monitoring for signs that cancer has returned. They experience fertility problems and mental distress associated with their diagnosis and treatment, as well as sexual dysfunction, osteoporosis, and other issues. According to the most recent National Cancer Institute statistics, 65% of all adults diagnosed with cancer in 1997 survived their cancer for at least 5 years, compared with 49% of those diagnosed in 1975. But until relatively recently, most former cancer patients have had to struggle through what it means to be a "cancer survivor" on their own and, as reported in a November 2005 IOM report, many are "Lost in Transition."
"I'm sure if you surveyed most oncologists, this still isn't on their radar screen," said Craig Earle, M.D., a gastrointestinal oncologist and medical director of the Lance Armstrong Foundation Adult Survivorship Clinic at the Dana-Farber Cancer Institute in Boston. "We've been trying to change that."
In fact, the best place for many former cancer patients to receive care may not even be in an oncology practice but with their primary-care physician, according to a study presented at the May 2006 American Society of Clinical Oncology (ASCO) meeting and published in the Journal of Clinical Oncology.
Eva Grunfeld, M.D., D.Phil., director of health services and outcome research at Cancer Care Nova Scotia, Canada, and her colleagues conducted a series of studies in Britain and Canada comparing the health outcomes of women after primary treatment for breast cancer. The most recent study, a multicenter, randomized, controlled trial, assigned 968 women with early-stage breast cancer to receive follow-up care at either a cancer clinic or a primary care setting. They found no differences in the rate of recurrence or adverse outcomes based on where patients received their follow-up care. What's more, patients who saw their family physician had lower out-of-pocket costs and reported being more satisfied with their care than those who were monitored in cancer care settings.
Although the patients in Grunfeld's study all received routine health maintenance screenings, many former cancer patients apparently do not.
"Patients are unclear after their adjuvant treatment is over about who is responsible for their follow-up visits," said Grunfeld. "They feel abandoned. Suddenly, they aren't having all the visits they used to have, but there has been no clear transfer of care."
Grunfeld and cancer survivor advocates are working toward what's being called "survivorship care planning," a tool akin to a discharge summary that brings together all the procedures done during cancer treatment and contain recommendations for follow-up care. And Earle is among a small group of academic oncologists, patient advocates, and public-health professionals testing ways to ease the burden on patients as they complete their cancer treatment and help them move out of the oncologist's office and into a primary-care setting.
In Canada, Grunfeld is taking her research directly to eight cancer centers; half will transfer their cancer-free, former breast cancer patients to a primary-care doctor, and the other half will continue to see patients for follow-up. Those patients transferred to a primary-care setting will receive a one-page survivorship care plan that will also be sent to their primary-care physician. The plan will detail their cancer treatment and give recommendations for follow up, including aromatase inhibitor therapy to prevent recurrence. Patients in both groups will be monitored to make sure they receive other services recommended by health services guidelines. For example, Grunfeld wants to know that they are getting not only a yearly mammogram but also other preventive care, like colonoscopies, lipid profiles, and referrals for counseling if patients show signs of anxiety or depression.
"We want to see that that whole package is being done," she said. "The rationale is that for 80% of women who are diagnosed with breast cancer, they will be well and will not experience a problem with breast cancer again. So it's really important that we don't lose sight of these other preventive measures."
Addressing a Fragmented System
In the United States, survivorship care planning has been slowly gathering momentum. The recent IOM report has helped focus attention to the issue, and the Lance Armstrong Foundation has made survivorship care planning a major focus of its efforts.
The foundation has funded five adult survivorship clinics: Dana-Farber, Fred Hutchinson Cancer Research Center in Seattle, Memorial Sloan-Kettering Cancer Center in New York, UCLA's Jonsson Comprehensive Cancer Center in Los Angeles, and the University of Colorado Cancer Center in Denver. The goal of the grant program is to develop demonstration projects that will serve as models for the most effective survivorship care and that can be transferred to settings outside the academic medical center.
The program is unique in two respects, according to Caroline Huffman, a Lance Armstrong Foundation program officer. The centers must work together to solve problems and overcome barriers to implementation, and each center has three community affiliates that they work with to implement survivorship care planning in the local community. Huffman says the program has made strides toward raising awareness of survivorship issues, but she acknowledges that barriers to making survivorship planning available to all cancer survivors will take time to overcome.
"Just trying to come up with a patient summary that we can get clinical buy-in on and an informatics system that would work across settings and across the country is no small project." said Huffman. She said that the foundation's effort was always envisioned as seed funding, and it is hoping that government funding agencies will step up to help develop a national registry of cancer survivors.
Earle agrees that the model he has developed at Dana-Farber is not going to be directly transferable to private practice because of the time and staff considerations.
"I think that survivorship clinics in places like tertiary-care centers are important as platforms for conducting rigorous research, but only minor, minor fractions of cancer survivors can be seen at those clinics," said Grunfeld. "These clinics are not going to solve the problem of survivorship from a population perspective."
The biggest barrier to implementing survivorship care plans is that the U.S. health care system is geared toward reimbursement, said Patricia Ganz, M.D., director of the division of cancer prevention and control research at Jonsson Comprehensive Cancer Center. Unless physicians get reimbursed for the time it takes to pull together the plan, it won't happen. At the federal level, a house bill that would make survivorship care plans Medicare reimbursable is making its way through committee.
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"People follow the dollars," said Ganz. "Identifying [survivorship care plans] as a needed service and as being billable would enhance compliance."
Ganz is part of an ASCO working group that is developing templates for survivorship care planning. She said the group expects that within 3 or 4 months the templates will be available for ASCO members to begin using in their practice. But, she said, "It's all voluntary."
"Our [healthcare] system is really fragmented," she added. "I don't think there is going to be one uniform format because every institution is going to figure it out the best they can."
Blue Cross of California is taking the lead in implementing survivorship care planning among its 25,000 member physicians and 3.5 million subscribers. It is piloting software that would make the ASCO templates downloadable to PDAs or other mobile devices.
The company will be mailing a packet of information about survivorship care planning to all its members this fall, said Jennifer Hausman, information resource consultant with Blue Cross of California. And it will make a continuing medical education course on survivorship it held in June 2006 available on its Web site in September.
"We are trying to empower our members with as much information as possible," she said.
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