• 7/12/2004
  • New Orleans, LA
  • By Marie Rosenthal
  • Hem/Onc News

Presidential advisory panel releases report aimed at improving outcomes for survivors.

Although there are nearly 10 million Americans who are cancer survivors, a threefold increase over the number of survivors in 1971, many enter a world that is ill equipped to handle their special needs, ranging from psychological to medical, says a new report from the President’s Cancer Panel.

“In 1971, there were 3 million cancer survivors in the United States; in 1986, there were 6 million. In 2004, there are close to 10 million cancer survivors,” said LaSalle D. Leffall, Jr., MD, who is chair of the panel, which just issued a report that looks at the late effects of cancer treatment across a survivor’s life. The panel made recommendations about issues concerning four age groups: children, adolescents and young adults, adults and the elderly.

After holding town meetings in four cities — Austin, Texas, Birmingham, Ala., Denver and Philadelphia — to talk with cancer survivors, their caregivers and health care givers, the panel found that patients reported problems during and after cancer treatment.

Late effects

Years after treatment, cancer survivors reported late effects, such as learning disabilities among children; infertility or complications with pregnancies; premature aging and heart disease; psychosocial effects and prejudicial treatment, including being denied life or health insurance. Survivors reported depression and anxiety rooted in their fight against cancer that later affects their quality of life and ability to work, panelists said.

“There were overarching issues that we found,” Leffall said at the 40th Annual Meeting of the American Society of Clinical Oncology here. “Issues affecting survival across the lifespan.” Speaking for the panel, Leffall said that the best way the government could handle these problems was to “implement comprehensive health care reform so that patients who have no evidence of cancer, but are still having problems could still get proper access to care. We believe that was extremely important.”

The provisions of this reform should include coverage for psychosocial services during and after treatment; and reimbursement for follow-up care, including that provided by non-physician personnel, he explained.

Medical records
In addition, he suggested that each patient receive an electronic medical record that spells out the individual care given to that patient, as well as a follow-up care plan. This way, patients could provide important medical histories to future doctors if the patient has a recurrence, residual effects or other illness related to cancer treatment. The follow-up care plan should include a schedule of periodic cancer screenings and examinations for the known late effects of therapy. “Every individual patient should be given an electronic record of all the health care they have received and important disease information,” said Leffall, who is the Charles R. Drew professor of Surgery at Howard University College of Medicine in Washington, D.C. “We think that every patient should have this record that would let the patient know and anyone seeing that patient for follow-up care just what was going on. This came out most clearly with pediatric cases, but there were many adults who did not know what chemotherapy they had or what were the doses they received.”

In addition, the Institute of Medicine (IOM) should evaluate the impact on HIPAA to health care. “In an effort to ensure privacy, we found sometimes that it could be an impediment to getting information out of patients because of privacy,” he said. “Of course it is important not to invade someone’s privacy, but we don’t want that to interfere with his or her health care.”

He said the government must evaluate the impact of care and give specific referrals whether they are to a cardiologist, a psychologist or a support group.

The recommendations for specific age groups included the following:

The panel suggested that the NCI and the Department of Education collaborate on ways to improve classroom re-entry and reintegration of young people with cancer or other chronic or catastrophic illnesses. These could include remote learning and teacher training. The panel found that children, parents and teachers were not ready to treat the psychological issues that occur when a child goes back to school after a bout of serious illness. Often, teachers did not know about disabilities, such as memory lapses, that can result from cancer treatment. “We believe that it is important that there is proper school re-entry to deal with the issues. The Department of Education working with the NCI could do something to help these children,” Leffall said.

The panel said that surveillance and research of adolescents and young adults, a “vastly understudied population” could be improved and would enhance treatment design. Prevention and quality-of-life interventions should be developed to benefit young people as they approach adulthood. Leffall called them the lost cohort because these patients become adults, go off to college or move to find better jobs and are frequently lost to follow-up. Leffall said that what is needed is “behavior data, surveillance and medical data that will help follow these patients in a better manner.”

An overwhelming problem for young adults is fertility, and some patients reported that preserving fertility was not always discussed before cancer treatment.

For adults, the panel said that more complete recommendations are needed to guide the post-treatment care. These should be updated regularly and published to ensure that survivors, patient educators, providers and insurers have access to them. There is a lack of research in this population that limits reimbursement for follow-up care. Leffall called this “the sandwich generation,” a generation that is trying to receive or give cancer care to a loved one while being sandwiched between responsibilities for children and older parents. Leffall said this was a group that might need support groups and referrals that can help with the problems they face.

The panel said that the IOM or other independent body should undertake a periodic assessment of the effect of legislative changes to Medicare to make sure older adults have proper access to diagnostic and therapeutic care, so they are not denied the care that they deserve. “Very often older patients have co-morbidities that can interfere with care, they should have information and referrals to take care of both problems,” he said. The number of cancer survivors is expected to increase and the need for posttreatment care and ancillary services will grow, too, making these issues even more important, according to the panel.

Source: LaSalle D. Leffall, Jr., MD
For more information:
* President’s Cancer Panel. “Living Beyond Cancer: Finding a New Balance.” 2003-2004 Annual Report. May 2004. NIH. Bethesda, Md.
* Leffall LD. Presidents Panel on Cancer: Report on Cancer Survivorship. Presented at 40th Annual Meeting of ASCO. New Orleans. June 5-8, 2004.