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Objective: In a decision analytic model, we asked parents and childhood cancer survivors whether an increased survival rate in germ cell tumors was judged worth the increased risk of sustaining permanent hearing loss due to cisplatin chemotherapy.
Methods: A decision model was constructed to reflect the therapeutic choices faced by families with children diagnosed with germ cell tumors in the Children’s Cancer Group treatment protocols 8882 and 8891. Treatment options included different dose schedules of cisplatin, their associated event-free-survival rates and their corresponding risks of hearing loss. The decision model also accounted for adverse events such as relapse, salvage therapies, and the resulting additional toxicity. Three vignettes of hearing loss were constructed to describe outcomes of surviving cancer with mild, moderate, and moderately severe high-frequency sensorineural hearing loss. Standard Gamble utility scores for the 3 vignettes from 31 parents of childhood cancer survivors and from 17 teenagers and young adults who had survived childhood cancer (age 13 – 21) were assessed.
Results: Based on the preference utility scores, 28 out of the 31 parents tested (90%) would recommend the high-dose regimen , while only 10 out of the 17 childhood survivors tested (59%, p < 0.01) suggested high-dose treatment. Further analyses of the SG utility scores revealed that this difference was due to parents' assessment of cancer survival with sensorineural hearing loss as manageable and not worth the risk of death (average SG utility 0.96). In contrast, children who survived cancer deemed such outcomes significantly detrimental and were willing to take a risk of death to mitigate the possibility of hearing loss (average SG utility = 0.92, significantly different from parents’, p < 0.05). The differences in model-recommended decisions were not affected by the respondents’ numeracy and/or their propensity to exhibit omission bias.
Conclusions: As childhood cancer survivors enter adulthood and take charge of their own health, some would retrospectively make different treatment decisions than did their parents. This insight may help promote a better therapeutic decision making process in children with cancer, and may aid our understanding of the complex ethical issues surrounding such treatment decisions.
See more of Oral Concurrent Session A - Judgment and Decision Making
See more of The 26th Annual Meeting of the Society for Medical Decision Making (October 17-20, 2004)