As modern medicine continues to provide us with tools to help patients survive longer, there is an increasing exploration of what this survival looks like. This long-term outlook is especially important in pediatrics, particularly in subspecialty fields such as oncology, neonatology, and cardiology. Therefore, I was excited to read a new study being early released this month by Greenzang et al (10.1542/peds.2019-3552) to assess parent and physician preferences during treatment of children with cancer. The authors conducted this very interesting study by surveying parents of children with cancer and their oncologists over an approximately one-year period to assess the relative importance of various long-term morbidities and risk of cancer recurrence in contributing to shared clinical decision-making. They utilized a discrete choice experiment tool, a series of questions which permit quantification of the relative importance of specific factors/goals of care when deciding or choosing treatment options. Among the factors/goals to consider, they included cure of primary malignancy and the risk of five specific late side-effects: neurocognitive delay, infertility, cardiotoxicity, second malignancies, and growth impairment. The study team approached parents of children within the first year of a first-time diagnosis of cancer for potential participation.
The authors had an excellent participation response rate overall with no significant differences between those who opted to complete the choice experiment tool and those who did not. Of note, a majority of the responding parents who participated in the use of the tool were highly educated white females, hence limiting the generalizability of the results. It is especially pertinent as populations where the risk-benefit of cure versus late morbidities would likely matter the most –i.e. less educated families with resource limitations – might not demonstrate the same results. Parents and physicians who participated in the study both most strongly preferred to choose a treatment that minimized risk of severe neurocognitive delays in the long term, with this association being stronger than that of achieving complete cure of primary malignancy upfront and the desire to reduce risk of second malignancies later. Additionally, the authors also calculated a maximum acceptable risk in which they assessed how much risk of side effects was acceptable to parents or physicians in exchange for a 10% better chance of complete cure. Both groups were least willing to risk a second malignancy but were tolerant of a significant increase in risk of infertility.
This study is fascinating and illuminating, especially as I am soon to become an attending intensivist caring for these children in their sickest moments when important life support decisions are made, and some of these preferences may be relevant. Perhaps having a formal assessment such as this, performed by the primary oncologist early in the course of a child’s illness, may help with subsequent difficult conversations when these children are critically ill and decision-making may be clouded by the imminent clinical outcome. It is hard to ascertain whether any of these children were in the intensive care unit or had been in the intensive care unit at the time of the survey distribution, as that stressful environment could alter some of the parental preferences that might have been selected in a non-critical care setting. Finally, the tool developed by the authors is very well-designed and goes into substantive detail in regard to options that might be chosen by a respondent however the time it took some parents to fill it out (~20-25 minutes) may potentially limit its utility in parents who are younger or less educated or in more critical scenarios.
I also cannot help but compare these oncologic scenarios to situations that occur with other types of complex patients, such as those with significant neurologic impairment who are being considered for technology dependent procedures such as surgical placement of tracheostomies and gastrostomy tubes. Perhaps an assessment of the sort discussed in this paper may be helpful to parents of these children with other complex medical condition as well as their providers as we try to make a combined decision that is best for the patient and the family. Through this study, the authors beautifully demonstrated that it is definitely feasible to engage parents in complex shared medical decision-making in a detailed and sophisticated way. The more we can partner with the parents up front in the care of children with chronic disease, the better the chances we may have for a cooperative relationship in their long-term management with less discordance in the expectations and goals of their care.
