Pharmacogenomics in pediatric oncology: Australian adolescent or young adult and caregiver perspectives

TL;DR

This study explores Australian adolescents and caregivers' views on using pharmacogenomic testing in pediatric oncology, highlighting support but also concerns like insurance discrimination and data security.

Contribution

The study uniquely includes adolescent and young adult perspectives on PGx testing in pediatric oncology, identifying barriers and autonomy issues.

Findings

98% of participants supported PGx testing for themselves or their children.

Insurance discrimination and data security were primary concerns among participants.

AYA patients wanted to be directly involved in PGx decisions but reported low autonomy scores.

Abstract

Preemptive pharmacogenomic (PGx) testing in pediatric oncology patients could reduce toxicity and improve efficacy of medications yet remains underutilized. Consumer identified implementation barriers have not been extensively explored nor included adolescent or young adult (AYA) patient perspectives. This study describes Australian pediatric oncology consumer perspectives on PGx testing, elucidating barriers to implementation.

A theory-informed, quantitative survey was used to assess knowledge and attitudes toward PGx in 38 AYA patients and 66 caregivers. Additionally, AYAs were assessed for autonomy using a validated scale.

Participants viewed PGx testing positively, and 98% at least “somewhat agreed” that they would want to be tested/want their child to be tested. Concerns were identified in both AYA patient and caregiver groups, primarily the possibility of insurance discrimination and data security. Almost 90% of AYA patients expressed a desire for direct involvement in decisions regarding their PGx testing. However, the mean autonomy score (15.2) suggests that many felt they were not consistently given the opportunity to participate in decisions about their own lives.

Despite positive attitudes toward PGx testing, pediatric oncology consumers still have some concerns that need to be addressed for successful implementation. Additionally, AYA patients should be included in PGx processes and implementation design.

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