Young Hodgkin's Lymphoma Survivors Missing Recommended Care

Roxanne Nelson, BN, RN

January 13, 2016

Adolescent and young adult (AYA) survivors of Hodgkin's lymphoma are at high risk for long-term and late effects related to their treatment. Guidelines are available to help manage posttreatment care, but unfortunately, fewer than half of this group receive all of the recommended services within the first year after treatment, according to results of a new pilot study.

Nearly all survivors attended recommended oncology appointments, and 70% of survivors received recommended laboratory tests within the first 5 years after their treatment. But the study found evidence of overuse and underuse of various imaging tests.

"We have evidence and consensus-based guidelines available from organizations such as the National Comprehensive Cancer Network [NCCN] and the Children's Oncology Group to help us manage the care of AYA survivors," said Erin Hahn, PhD, MPH, a research scientist at Kaiser Permanente Southern California. He was discussing the findings at a press briefing held ahead of the upcoming Cancer Survivorship Symposium in San Francisco.

"Assessing adherence to guidelines is an important part of high-quality care, and to see if we can identify gaps and hopefully close them," she said.

Hodgkin's lymphoma accounts for 12% of all new AYA cancer diagnoses. Although treatment is very effective, patients are at a high risk for late treatment effects, including cardiac and thyroid conditions, lung disease, second cancers, infertility, and psychosocial problems. The onset of late effects varies, with complications emerging as late as 10 years after treatment in some cases, she noted.

In this study, Dr Hahn and her colleagues assessed adherence to the NCCN recommended posttreatment services, which include oncology visits, laboratory studies, and CT scans. They also assessed use of nonrecommended posttreatment services (PET scans and CT scans after first year).

They identified 354 Hodgkin's lymphoma survivors, who were diagnosed between the ages of 15 and 39 years, from an integrated healthcare system and examined use of posttreatment services. The patients had been diagnosed, treated, and followed within the Kaiser Permanente Southern California system, which has 3.8 million members and 14 medical centers in that region.

Kaiser has a long history of electronic record use, Dr Hahn explained. "It has been difficult to track these patients using data that weren't self-reported, but in this study, we were able to access the medical records because of electronic medical records."

All study participants were diagnosed with classical Hodgkin's lymphoma from 2000 to 2010. They were diagnosed, treated, and followed for at least 2 years.

Almost all of the survivors (96%) took part in recommended oncology visits within the first 5 years, and 70% received recommended laboratory studies.

But there was also overuse and underuse of imaging tests. Two thirds of survivors received a recommended CT scan in the first 12 months post treatment, but 47% also received nonrecommended CT scans in year 2. In addition, 33% received nonrecommended surveillance PET scans. The researchers were unable to determine clinical indications for the nonrecommended imaging tests.

Overall, only 48% of patients received all recommended care within the first 12 months, the study found.

The study also evaluated a subset of survivors who were at least 10 years post treatment and had received high-dose anthracycline-based chemotherapy plus radiation. According to NCCN guidelines, cardiac screening is recommended in this high-risk group of patients.

Although the majority of AYA survivors (90%) received annual blood pressure testing, only 30% received an echocardiogram, an electrocardiogram, or a MUGA scan.

The overarching goal is to ensure that AYA survivors receive high-quality care to achieve optimal outcomes, Dr Hahn concluded. "This study shows that there really is a need to improve care delivery for these patients, and our next steps are to think about designing and implementing programs to address these issues."

Opportunities to Improve Adherence

In her discussion of the paper, Merry-Jennifer Markham, MD, an associate professor of medicine at the University of Florida, Gainesville, pointed out that survivorship care is crucial in the AYA population of Hodgkin's lymphoma survivors, because most of them have long lives ahead of them.

"We have national guidelines in place to determine screening for recurrence, screening for late treatment effects, and methods to maintain health," said Dr Markham, who moderated the briefing.

But despite these guidelines, this study demonstrates that fewer than half of AYA survivors are receiving the critical components of survivorship care, she noted.

"Clearly, we have some opportunities ahead of us to improve adherence to posttreatment guidelines," Dr Markham said.

The study was funded by the Department of Research and Evaluation, Kaiser Permanente Southern California. All of the authors are employees of Kaiser Permanente. Dr Markham reports no relevant financial relationships.

Cancer Survivorship Symposium (CSS) Advancing Care and Research: Abstract 107. Presented January 15, 2016.


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