‘Alarmingly’ few childhood cancer survivors undergo recommended surveillance for late effects
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A high percentage of childhood survivors do not undergo guideline-recommended monitoring for late effects, according to results of a population-based study.
Researchers used the Los Angeles Cancer Surveillance Program to identify 253 at-risk young adult survivors of childhood cancer. Half were Hispanic or Latino, and a mean 14.5 years (range, 5-22) had elapsed since treatment completion.
Investigators determined 119 had been indicated for cardiac surveillance, 68 were indicated for thyroid surveillance and 66 were indicated for breast surveillance.
However, only about one-third of survivors adhered to monitoring recommendations for each late effect (cardiac, 36.1%; thyroid, 31.9%; breast, 36.4%).
Researchers identified three factors positively associated with adherence to surveillance guidelines: being in follow-up care, having any health insurance, and receipt of education about the need for follow-up with monitoring (P <.05 for all).
“Discussion of a survivorship care plan and the need for follow-up care was associated with adherence to surveillance,” researcher Joel Milam, PhD, professor of epidemiology and biostatistics and co-leader of the cancer control program at UCI Chao Family Comprehensive Cancer Center, told Healio. “It can be helpful for clinicians to take the time in the clinical encounter to have these discussions and offer support to patients.”
Healio spoke with Milam about the motivation for the study, the potential explanations why so many patients do not undergo recommended surveillance, and the steps that can be taken to improve adherence.
Healio: What are the current recommendations for long-term surveillance of childhood cancer survivors?
Milam: The Children’s Oncology Group, through a consensus-based process, has developed long-term follow-up guidelines that they revise every few years. The recommendations vary depending on the treatments received and the cancer type. If a patient has received radiation to the chest, for example, they should have echocardiograms periodically to look for early heart disease.
Healio: What motivated you to study this?
Milam: As a scientist, I love the process of finding things out and going in directions that aren’t fully understood. I also was influenced by the vulnerability of this population and the high needs that exists. This type of research can help move the needle on policy levels, albeit slowly. Ideally, the data will be used to improve health care access for this population.
Healio: What were your key findings?
Milam: For this specific study, we examined a subset of survivors at risk for late effects. We could look at whether they were screened for cardiac, thyroid or breast late effects. These are three unique subgroups who need to be getting these follow-ups earlier in life.
We didn’t know what to expect. We suspected adherence would be low, but we didn’t think it would be lower than 40%, which it was for all three groups.
Healio: Did the findings surprise you?
Milam: As clinical practice evolves, survivorship care has improved dramatically. New clinicians entering the field are much more attuned to these issues. This cohort was more recently treated, and there have been treatment improvements, as well. Unlike previous studies, we also were able to look at a population with good representation of survivors from racial or ethnic minority backgrounds. Still, we saw rates that were similar to what has been found in the past — they were alarmingly low across the board.
Healio: Why do you think the rates are so low?
Milam: There are a lot of reasons and, in this study, we could only look at a handful of them. Insurance, of course, is very important. We have studied this before and after the implementation of the Affordable Care Act, more survivors were able to get health insurance. We also saw rates of follow-up care go up, but nowhere near what you might expect. Anecdotally, in speaking with clinicians who run survivorship clinics focused on late effects, we’ve heard there are survivors who want to see them but their insurance does not allow it. Part of the issue may be that general practitioners and even nonpediatric oncologists may not be fully aware of survivorship guidelines. If the survivor is not aware of them and their provider is not aware of them, they likely are not getting the surveillance they need. This is where survivorship clinics come in. They actually look at the treatment received and make sure the patient is getting guideline-concordant care. We have set up informal networks where the clinician has a list of providers who are aware of these guidelines, and they try to refer their survivors out to these providers.
Healio: What can oncologists do to support your efforts?
Milam: The effectiveness of survivorship care plans has been debated, but part of these plans is to inform patients why they need to have certain types of follow-up. In our larger cohort data, fewer than half reported receiving one of a survivorship care plan. We did see a relationship between those who receive these plans and receipt of follow-up care.
Another factor at the individual survivor level is the patient’s general confidence in navigating the health care system. It helps to be very supportive in letting survivors know how to fully engage with the health care system. Many of the systematic aspects of the health care system are so overwhelming, some survivors may give up on navigating it. One of the strongest risk factors for dropping out of care is the length of time since diagnosis. There’s often a general disengagement with follow-up care over time. Oncologists can help by repeatedly having this conversation with cancer survivors.
Reference:
For more information:
Joel Milam, PhD, can be reached at milamj@hs.uci.edu
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