Study Finds Greater Care Coordination Needed for Adult Survivors of Childhood Cancers

Tara Henderson, MD, MPH

By Tara Henderson, MD, MPH

One of the great successes in modern medicine is the treatment of childhood cancers.

Currently, for all children diagnosed with a cancer prior to the age of 21 years, more than 80 percent can be cured. As a result, there is a growing population of childhood cancer survivors (CCSs). It is estimated that there are approximately 350,000 childhood cancer survivors living in the US.

Unfortunately, there is a cost to these cures.

A recent study found that more than 90 percent of adults who survived cancer as children have a chronic health condition. Survivors have an almost six-fold risk for severe or life-threatening conditions as compared to their siblings.

These health conditions include second cancers, organ damage, and cognitive deficits. These findings have been well reported, still many primary care physicians consider themselves unprepared to guide the long-term care of these individuals.

Our study published recently in the Annals of Internal Medicine revealed that few internists are comfortable caring for adult CCSs and their knowledge of the available surveillance guidelines for childhood cancer survivors is suboptimal.

In 2003, the Institute of Medicine called for life-long risk-based health care for patients who had survived cancer as children. In response, the Children’s Oncology Group developed publicly available guidelines for recommended surveillance of  late effects, or conditions that developed years later, and second cancers.

Yet, over a decade after the IOM report, studies indicate that most survivors are not engaged in appropriate risk-based health care.

Most CCSs are not followed by a cancer center but by a primary care provider in the community. Our understanding of the nature of care delivered to this population by primary care providers is limited.

So in order to properly transition survivors from a cancer center to primary care, we need to understand if primary care providers are comfortable with caring with this population. Furthermore, are primary care doctors  even aware of the significant health risks associated with childhood cancer and its treatments; are they aware of the surveillance guidelines for this population; and, more generally, do they know what they need to do better care for these survivors?

Since more than half of primary care in the US is delivered by internists, we decided to do a nationally representative survey of this group.

The results were concerning. For example, in response to a vignette regarding a 29 year old female survivor of Hodgkin lymphoma who received chest radiation and anthracycline chemotherapy, fewer than 10 percent of internists reported that they would recommend appropriate breast cancer screening with annual breast MRI and mammograms, and less than 15 percent reported recommending appropriate cardiac screening with an echocardiogram every other year. .

I was particularly surprised by the small number of internists who were aware of the appropriate breast cancer surveillance for women exposed to chest radiation.

Women exposed to chest radiation have higher rates of breast cancer than women with a BRCA1 or BRCA2 mutation. Both the American Cancer Society and the Children’s Oncology Group have recommended physicians treat these patients as they would women with a BRCA mutation or a family history of breast cancer – early surveillance with breast MRI and mammography.

These recommendations are available publicly, and have been published in the Annals of Internal Medicine.

I am also surprised that more than 70 percent of internists reported they never received a treatment summary for the survivors they follow.

In 2006, the Institute of Medicine recommended survivorship care plans for all cancer survivors. And more recently, the Commission on Cancer associated with the American College of Surgeons, who accredits all cancer centers, mandated that all cancer survivors (pediatric and adult) be provided a survivorship care plan.

The plan includes a cancer treatment summary, information on possible late effects, identification of providers, and guidelines for follow-up care, including surveillance of second cancers and late effects based on available guidelines.

There is a lot of work to be done!

This is an effort that needs to be focused on the transition of cancer survivors from cancer centers to primary care physicians, and must include the oncologist, primary care provider and the survivors themselves.

We are planning studies aimed at finding better ways to disseminate survivorship care plans to these patients in the community.

We are also working with the Children’s Oncology Group Late Effects Committee to work to improve dissemination of the guidelines to the broader medical community and educate internists about the risks and health care needs of this high-risk population.

Tara Henderson, MD, MPH, is an Assistant Professor of Pediatrics and Director of the Childhood Cancer Survivors Center at the University of Chicago Medicine. She specializes in the diagnosis and medical treatment of patients with pediatric cancers. She has a particular interest in the care of childhood cancer survivors.

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