Treatment and Decision-Making Preferences of Adolescents and Young Adults With Advanced Cancer and Their Parents or Trusted Persons: An Adaptive Conjoint Analysis Study

Abstract

Purpose

Treatment decision-making in adolescents and young adults (AYAs) requires preference consideration and tradeoffs. Using MyPref, an adaptive conjoint analysis tool, we examined and compared the decision-making and treatment preferences of both AYAs and their parent or other trusted person (PTP).

Patients and Methods

AYAs aged 15–30 with advanced cancer independently completed MyPref, including demographic questions, the Control Preference Scale, and the adaptive conjoint analysis survey. AYAs could invite a PTP to participate. Participants received a personalized MyPref Summary Report quantifying their preference for nine treatment attributes. Preference scores were summarized and compared by participant group, AYA age, sex, cancer diagnosis, and distance from the hospital.

Results

We enrolled 50 AYAs, 15 of whom selected a PTP to participate. Most AYAs identified as male (64%), White, non-Hispanic (84%), and had solid tumors (48%). The majority (80%) of PTPs identified as the AYA's mother. AYAs favored participant-led decision-making, while PTPs preferred a shared approach. Treatment attributes with the highest preference scores included time until cancer grows, quality of life, and side effects. Compared to PTPs, AYAs had lower preference scores for quality of life. Older AYAs ($\ge 24$ years) placed more emphasis on the time until cancer grows, whereas younger AYAs prioritized clinic visit frequency.

Conclusion

AYAs with advanced cancer exhibit diverse preferences for decision-making roles and treatment factors. Despite differences, participants valued longer time until cancer progression and quality of life. Future research should explore how preferences of AYAs and their PTPs change over time and optimal strategies for initiating preference discussions earlier in the illness course.