Multi-center randomized controlled trial on advance care planning for adolescents with cancer and their parents: Impact on parent-adolescent communication

Abstract

Purpose

This study evaluates whether the Benefits of Obtaining Ownership Systematically Together in pediatric Advance Care Planning (BOOST pACP) intervention improves parent-adolescent communication compared to care as usual.

Methods

In this multi-center parallel-group superiority trial, adolescent patients (10–18 years old) diagnosed with cancer and their parent(s) were randomized with a 1:1 allocation to a pACP intervention or care as usual. The primary endpoint was the adolescents’ assessment of quality of parent-adolescent communication at 3 months, and the secondary was quality of parent-adolescent communication at 7 months.

Results

Forty-nine families were enrolled (28% enrollment rate) between March 2021 and March 2023. No significant differences in parent-adolescent communication were observed between the BOOST and care as usual groups at 3 months (T1) (baseline-adjusted mean difference = 1.4; 95% CI -4.1 to 6.9; p = 0.608), effect size 0.13. Similarly, at 7 months (T2) differences were not significant (baseline-adjusted mean difference = 5.2; 95% CI -0.6 to 11.0; p = 0.077), effect size 0.49 (and 0.67 for father-adolescent communication). No significant differences in anxiety scores of adolescents and parents were found and no adverse events were reported.

Conclusion

The BOOST pACP intervention did not significantly improve parent-adolescent communication for adolescents with cancer and their parents at 3 months after baseline. However, the results indicate it might have a clinical impact in later stages of the follow-up period. Limitations of this study are the underpowered sample size and the lack of validated questionnaires for specific ACP communication.

Clinical trial registration

ISRCTN, number 33228289 https://doi.org/10.1186/ISRCTN33228289.