CHICAGO – Every parent of a teenager has heard some variation of the demand, "Stop treating me like a kid!" The same can be said for adolescent and young adult survivors of childhood cancers, investigators say.
With childhood cancer survivorship rates hovering around 80% (according to Surveillance, Epidemiology and End Results data from 1996 to 2003), many patients are outgrowing their pediatricians and their pediatric oncologists. The patients still need regular follow-up, but just who will do that follow-up and how thoroughly is still an open question, said Dr. Karim Thomas Sadak, a pediatric oncology fellow at the Center for Cancer and Blood Disorders at Children’s National Medical Center in Washington, D.C.
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Young cancer survivors are outgrowing their pediatricians, raising questions as to what comes next.
He and his colleagues surveyed 103 cancer survivors aged 16-24 years and asked them to identify what they found to be the most important factors in their decision to make the transition from a survivorship program at a children’s hospital to a similar program at an adult institution.
"They told us some things we were very surprised to hear about their preferences for care. By far, the most commonly selected component of their clinical care that was rated as very important was the acceptability of their insurance. We might expect to hear that from 30-year-olds, but these people are most likely on their parents’ insurance, as they are under 25," Dr. Sadak said in an interview at the annual meeting of the American Society of Clinical Oncology.
Based on the responses, Dr. Sadak and his associates asked a social worker who helps young patients make the transition to adult care to discuss insurance options with patients and their parents before and during patient visits and in follow-up.
"She gained knowledge about different insurances, reimbursements, copays, and policy issues related to survivorship care, and then she was able to proactively address these concerns with survivors," he said.
Survivors also rated flexible scheduling and comprehensive care as either very important or important. Paradoxically, while 97% of responders said that they wanted to make a transition that promoted independence, 96% wanted their primary childhood cancer provider present during the transition.
Conversely, "availability of vocational training and peer networking as well as considering readiness and a gradual introduction appear to be least important" factors in the decision to make the transition, Dr. Sadak said.
Internists Willing but Uncertain
In a different study, investigators from the United States and Canada surveyed U.S. internists about their knowledge of caring for childhood cancer survivors and found that most general internists said they are willing to follow adolescent and young adult survivors of childhood cancers but many also said that they would feel more comfortable doing so in collaboration with a cancer center.
Internists need to know that there are a wide variety of resources available to help them care for such patients, said coauthor Dr. Eugene Suh, a fellow in pediatric oncology at the University of Chicago Medical Center.
"Internists are really good at gathering information, but I don’t think they necessarily know that this information is out there to help guide them in taking care of these cancer survivors," he said in an interview.
In their survey of a random sample of 2,000 U.S. general internists, 1,025 of whom responded, the investigators found that 72% of those who had seen pediatric cancer survivors in the past 5 years said they never received a treatment summary or survivorship care plan documenting diagnosis, cancer therapy, and plan for follow-up.
Additionally, on a 7-point scale rating familiarity with the Children’s Oncology Group (COG) long-term follow-up guidelines, most respondents reported being "very unfamiliar" (mean score of 5.2 points) with the recommendations.
When presented with a clinical vignette of a female survivor of Hodgkin’s lymphoma treated at age 16 with 25 Gy of mantle radiation and cumulative doses of doxorubicin 150 mg/m2 and cyclophosphamide 15 g/m2, 73% did not recommend yearly breast cancer surveillance, 85% did not recommend cardiac surveillance, and 23% did not recommend thyroid surveillance.
The investigators plan to conduct intervention studies aimed at improving general physicians’ comfort with and knowledge of long-term care for survivors.
Research Resource
One source for survivorship studies could be vertically integrated health care systems, said Dr. Robert M. Cooper and colleagues from Kaiser Permanente Southern California in Los Angeles.
They found that, 5 years after diagnosis, 77% of 4,782 adolescent and young adult cancer patients were still being cared for by Kaiser physicians, as were 62% at 10 years.