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Childhood cancer survivors experience a gap in care, physician study shows

Many internists don't feel equipped to manage care of adults who had cancer as children

MAYWOOD, Ill. – A recent study shows that many internists feel ill-equipped to care for adult patients who are childhood cancer survivors. Eugene Suh, MD, assistant professor in the division of Pediatric Hematology & Oncology at Loyola University Chicago Stritch School of Medicine, was first author of the study that was conducted the University of Chicago with Tara Henderson, MD, MPH.

As technologies and treatments advance, the number of childhood cancer survivors is growing. In fact, it is estimated that there are more than 350,000 survivors in the U.S.  As these children grow into adulthood and their care is transitioned to adult medicine providers, Suh’s study has shown that many internists don’t feel prepared to provide the care and monitoring necessary for these patients.

In response to this need Loyola University Health System has established a Childhood Cancer Survivorship Clinic. This multidisciplinary clinic is designed to help facilitate the health-care needs of survivors and families and to serve as a resource for primary care physicians.

“As we see the number of survivors grow, it’s so important to educate the patient, their family and physicians about care plans for survivors,” Suh said. “Providing information about a survivor’s treatment history as well as appropriate surveillance guidelines to patients and primary care physicians is a need that we now know exists."

The study involved a sampling of physicians from across the U.S. who listed general internal medicine as their primary specialty from the American Medical Association Physician Masterfile. The mailed survey assessed respondents’ demographics, medical education and practice structure. It was derived from a previous survey concerning physicians’ attitudes and knowledge about cancer care. A childhood cancer survivor was defined as a patient diagnosed with cancer at or before the age of 21 who was at least five years from cancer therapy completion and was cancer free.

“For some survivors this is a period of their life they would prefer to put behind them and not to think about, but it’s important for them to be engaged in their health care. We realize if they are to come back into the health-care setting it would most likely be with their primary care provider. That is why it’s so important for adult primary care physicians to feel comfortable caring for these patients,” Suh said.

Though surveillance guidelines for childhood cancer survivors have been available since 2003, the Institute of Medicine reports that most survivors are not engaged in appropriate risk-based health care. One likely reason identified by the study is that most primary care physicians are not provided survivorship care plans.

More than 61 percent of internists who received the survey completed it. Fifty-one percent said they had cared for at least one childhood cancer survivor and among these 71 percent said they never received a treatment summary. On average most internists reported being somewhat uncomfortable caring for childhood cancer survivors and most preferred to care for the patient in collaboration with a cancer center-based physician.

“From an oncologists standpoint, it is our responsibility to the patient to work closely with primary care providers to ensure cancer survivors are healthy and informed, and that they receive the best health care possible," he said.

The study showed how essential a survivorship care plan is for a patient and physician. It also highlighted the need for primary care physicians to have access to and education about the guidelines for caring for childhood cancer survivors.

“In an age of information technology sharing and education, resource availability could be accomplished by providing links to guidelines on webpages where primary care physicians turn for information and through webinars on survivor advocate websites,” Suh said.

With 70 percent of adult childhood cancer survivors having a chronic health condition, it is extremely important for physicians and medical institutions to bridge these communication and education gaps.

For more information on the Childhood Cancer Survivorship Clinic or to schedule an appointment, please call 888-LUHS-888 888-584-7888).

Loyola University Health System (LUHS) is a member of Trinity Health. Based in the western suburbs of Chicago, LUHS is a quaternary care system with a 61-acre main medical center campus, the 36-acre Gottlieb Memorial Hospital campus and more than 30 primary and specialty care facilities in Cook, Will and DuPage counties. The medical center campus is conveniently located in Maywood, 13 miles west of the Chicago Loop and 8 miles east of Oak Brook, Ill. The heart of the medical center campus is a 559-licensed-bed hospital that houses a Level 1 Trauma Center, a Burn Center and the Ronald McDonald® Children's Hospital of Loyola University Medical Center. Also on campus are the Cardinal Bernardin Cancer Center, Loyola Outpatient Center, Center for Heart & Vascular Medicine and Loyola Oral Health Center as well as the LUC Stritch School of Medicine, the LUC Marcella Niehoff School of Nursing and the Loyola Center for Fitness. Loyola's Gottlieb campus in Melrose Park includes the 255-licensed-bed community hospital, the Professional Office Building housing 150 private practice clinics, the Adult Day Care, the Gottlieb Center for Fitness, Loyola Center for Metabolic Surgery and Bariatric Care and the Loyola Cancer Care & Research at the Marjorie G. Weinberg Cancer Center at Melrose Park.

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Evie Polsley
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