A pediatric cancer diagnosis is devastating to the family and the focus is to treat the child’s cancer with the best possible outcomes. But choosing the best treatments often includes some hard choices — trading curative chances with long-term side effects.
A recent study in Pediatrics found that the avoidance of certain late effects, particularly severe neurocognitive impairment, is prioritized over an increased chance of cure. However, both physicians and parents were more accepting of a high risk of infertility in exchange for an increased chance of cure.
“In this study, we found much alignment between parent and physician priorities (particularly around avoidance of neurocognitive impairment and second malignancies) but also important areas of distinction (namely, different acceptable tradeoffs for risk of infertility),” wrote researchers, led by Katie A. Greenzang, MD, EdM, of the Boston Children’s Hospital, Boston, MA.
These priorities are important to assess, as more than 80% of children with cancer become long-term survivors. In addition, almost all adult survivors of childhood cancers have a chronic health condition directly related to the cancer or cancer treatment. Further, these conditions are severe or life-threating in nearly one-third.
Using a discrete choice experiment, Greenzang and colleagues studied the importance of several late effects of cancer treatment on treatment decision-making of parents and clinicians caring for children with cancer and acceptable trade-offs between late-effects risks and survival benefits.
They surveyed 95 parents (74% female; 85% white; 76% with college degrees) and 41 physicians (80% attending physicians; 59% female; 46% in practice 5-10 years; 61% specializing in hematologic malignancies) at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, Boston, MA, to assess their preferences for five late effects of treatment: impaired growth and development, neurocognitive impairment, infertility, cardiac toxicity, and second malignancies.
Each of these, they found, were statistically significantly associated with treatment choices, as was survival benefit (P ˂ 0.001). The most important consideration for parents and physicians, however, was avoiding severe cognitive impairment.
Physician decisions were influenced most strongly by circumventing severe neurocognitive impairment (preference weight: −2.62), avoidance of second malignancies (preference weight: −0.69), and risk of infertility (preference weight: −0.61 for 85% risk of infertility).
Similarly, the most significant parental concerns were the avoidance of severe cognitive impairment (preference weight: −1.78). But, unlike physicians, this was followed by the significance of finding a cure (preference weight: −0.53 for 80% chance of cure) and a decreased risk of second malignancies (preference weight: -0.53 for 20% risk of second malignancy).
In exchange for a 10% greater chance of cure, both physicians and parents were accepting of a high risk of infertility (increased risk of 80% and 137%, respectively).
Importantly, Greenzang and colleagues surveyed parents of children who were currently receiving cancer therapy, well before late effects manifested, noting that parents of survivors and children who were survivors may have different perceptions on the tolerability of late effects.
Other limitations included the use of a discrete choice experiment, which may not reflect actual treatment decisions; variability of parental preferences with other treatment plans than those included in this study; other late effects; and the exclusion of a “no treatment” choice in the survey.
“As the population of pediatric cancer survivors grows, the quality of survivorship becomes ever more important. Efforts to decrease the long-term toxicities of treatment must be informed by physician perception of intolerable toxicities and by patient and family values,” wrote Greenzang and fellow researchers.
“This nuanced understanding of parental late-effects priorities can help physicians provide the necessary information and support for parent participation in treatment decision making and may be used to determine priority areas for reductions of late-effects risks in clinical trials. Although cure comes at a cost, some costs may be too excessive to bear,” they concluded.
In an accompanying editorial , Tara M. Brinkman, PhD, of St. Jude Children’s Research Hospital, and James G. Gurney, PhD, of the University of Memphis, both in Memphis, TN, noted that the study pointed out that many parents did not perceive the actual risk of late effects for their children. Only 11% thought their children were at risk for later neurocognitive effects, and—excluding infertility—parents perceived the likelihood of the other late effects to be ≤ 8%.
“Thus, there appears to be signiﬁcant parental underestimation of perceived threat from long-term consequences of cancer and its treatment, which highlights the need for better education about late effects early in the diagnostic and treatment process. We believe these discussions would best occur beginning at diagnosis and during the informed consent process and should continue throughout the course of treatment and long into the maintenance and surveillance period after the declaration of cure,” they wrote.
“As the number of childhood-cancer survivors continues to grow, there is a clear need for research on physician–parent communication around potential late effects and the impact of these discussions on parental awareness and treatment decision-making. The current article by Greenzang et al provides us with a good starting point for that conversation,” concluded Brinkman and Gurney.
In choosing treatment preferences for children with cancer, treating physicians and parents are in agreement that neurocognitive impairment is the primary long-term consequence to avoid.
Parents of children with cancer may significantly underestimate risks of long-term consequences of cancer and its treatment.
E.C. Meszaros, Contributing Writer, BreakingMED™
Greenzang reported no conflicts of interest. The study was funded by a grant from the Agency for Healthcare Research and Quality and the National Institutes of Health.
Brinkman and Gurney report no conflicts of interest.
Cat ID: 138
Topic ID: 85,138,730,120,138,192,925