Disparities Affect Care of Young Adult Childhood Cancer Survivors in LA

By Marilynn Larkin

August 23, 2021

NEW YORK (Reuters Health) - Young adult childhood cancer survivors (CCS) in Los Angeles face age and ethnic disparities leading to inadequate follow-up care, a survey study suggests.

The findings aren't globally generalizable "due to different healthcare access/systems/insurance factors," Dr. Joel Milam of the University of California, Irvine, told Reuters Health by email. However, he noted, "Results can possibly generalize to other regions with similar sociodemographics - i.e., primarily southwest states such as Colorado and Texas."

"For follow-up care," he said, "we believe greater patient and provider education and outreach, use of written treatment summaries, and standardized plans for transitioning CCS from the pediatric to adult care setting (including insuring adequate insurance coverage) can all help."

As reported in JNCI: Cancer Spectrum, Dr. Milam and colleagues analyzed survey responses from 1,106 CCS in Los Angeles. Participants (54.2% Hispanic; 46% female) had a mean age of 11.6 years at diagnosis and of 26.2 at survey completion.

At the time of the survey, participants were an average of 14.5 years from diagnosis. The most common cancers were leukemia (36.1%), lymphoma (21.7%), and brain (15.2%).

Fifty-seven percent reported a recent cancer-related visit, with lower rates among older survivors. The most common healthcare providers for cancer-related follow-up care included adult oncologists (41.8%), pediatric oncologists (29.9%), and primary care physicians (15.5%) (overlap permitted).

Having insurance, more late effects, receipt of a written treatment summary, discussing long-term care needs with a treating physician, knowledge of the need for long-term care, having a regular source of care, and higher healthcare self-efficacy were statistically significantly associated with greater odds of recent follow-up care.

By contrast, older age, Hispanic or Other ethnicity (vs. non-Hispanic White), and years since diagnosis were associated with lower odds of recent care.

Each care component had a statistically significant, independent association with follow-up care, suggesting that each represents a unique indicator of engagement. However, only 12% of the sample received all components, indicating a critical need for improvement of the full spectrum of survivorship care.

The authors state, "Because receiving (43.9%) and sharing (28.1%) a written treatment summary were the least endorsed elements, these represent components amenable to improvement through practical interventions to increase utilization of care...Potential intervention targets include comprehensive, ongoing patient education, provision of written treatment summaries, and culturally-tailored support to ensure equitable access to and utilization of care."

Dr. Stephanie Savelli, Director, Childhood Cancer Survivorship Program and Pediatric Hematology-Oncology Fellowship Program at Akron Children's Hospital in Ohio commented in an email to Reuters Health, "I have seen similar disparities in our practice. For financial reasons, it is difficult for many of our Amish families to come to our multidisciplinary survivorship clinic. Multiple providers bill separately at this multidisciplinary clinic and that can be expensive for self-pay families."

"In addition," she said, "We have more difficulty getting our non-English-speaking families to attend our survivorship clinic and this has been especially true of our growing population of Quiche- speaking Guatemalan refugees."

"Education needs to start early and be reinforced often after treatment of childhood cancers.," she said. "It will be interesting to study a population that has been diagnosed and treated more recently, because cancer survivorship programs are numerous now and considered standard of care."

Akron's program starts three months after the end of therapy and includes a treatment summary at the initial and final transition visits; a Transition Readiness Assessment Tool, provided starting at age 12; and an assessment tool for older patients addresses such issues as sexual health, fertility and insurance, she explained.

Patients transition to primary care at age 25, at which time a packet of information is sent to the primary care physician.

Dr. Amir Mian, Chief of the Division of Pediatric Hematology/Oncology at the Medical College of Georgia at Augusta University, also commented by email. "The impact (of social determinants of health) is probably less significant in the pediatric population, since most, if not all, are supported by some safety net - e.g., Medicaid, CHIP, parent's health insurance coverage, etc. But it does become a major challenge once children 'grow out' of these support programs."

At that point, he noted, some insurers won't cover costs because cancer is a pre-existing condition. As a result, patients may not be able to afford care and decline because of the delay in follow-up. "This is more significant amongst patients of color, minorities or other economically disadvantaged patients," he said.

"These issues cannot be just addressed and fixed by a single institution," Dr. Mian concluded. "State-level policies, and the healthcare system as a whole needs to be updated if we are to eliminate healthcare disparities."

SOURCE: https://bit.ly/37Yav0n JNCI: Cancer Spectrum, online July 17, 2021.

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