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  • Publication # 13-RA009

Study finds primary care providers are willing partners in long-term followup care of survivors of pediatric cancer

Primary Care

"If you build it, they will come," summarizes the results of a new study on methods to help primary care professionals (PCPs) involved in the long-term care of patients who survive childhood cancer. Advances in the treatment of cancer in patients under 21 years old now result in approximately 80 percent long-term survival. This means that health care providers (HCPs) who deal with adults need training to detect and treat the late effects of pediatric cancer therapy. 

The researchers developed a Web-based tool, Cancer SurvivorLinkTM, which allows patients to securely store their health care information and share them with registered HCPs. The tool also includes information for providers on late effects of cancer treatment.

Fourteen HCPs from urban and rural areas of Georgia (nine PCPs and five specialists), who had at least one pediatric cancer survivor among his or her patients, were interviewed by phone. Overall, they said their familiarity with cancer survivor health care issues was moderate to very low. They expressed interest in brief summaries of evidence-based information on the late effects of cancer therapy that they could access online at the time of a patient’s visit, as well as lectures and online materials for continuing education (CE) credits. The researchers worked with Georgia chapters of HCP professional organizations, as well as national organizations, local/regional specialty groups, and survivor/parent groups, to present lectures with feedback questionnaires on survivor care.

Feedback from lecture attendees (58 nurses, 57 physicians, 51 nurse practitioners, and 21 social workers) led the researchers to develop a series of 10 initial QuickFacts and 3 initial CE modules for the provider portal of SurvivorLinkTM. During the portal’s first 12 months, it had 471 unique visitors and 1,129 total visits. The visitors came from 30 States—with the largest number from Georgia, where the researchers conducted an awareness campaign. Of the CE modules available, 21 providers completed an online text module on general survivor care and 18 completed an online video module on that subject; another 10 providers completed a CE module on neurocognitive/behavioral/psychological late effects of childhood cancer treatment.

The study was funded in part by AHRQ (HS21251). More details are in "Primary care providers as partners in long-term follow-up of pediatric cancer survivors," by Lillian R. Meacham, M.D., Ann C. Mertens, Ph.D., Paula J. Edwards, Ph.D., Brooke O. Cherven, R.N., M.P.H., and others in the September 2012 Journal of Cancer Survivorship: Research and Practice 6(3), pp. 270-277.


Page last reviewed June 2013
Internet Citation: Study finds primary care providers are willing partners in long-term followup care of survivors of pediatric cancer: Primary Care. June 2013. Agency for Healthcare Research and Quality, Rockville, MD.


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