Provider and Parent Perspectives on Prioritizing the "Asking and Monitoring" Pediatric Cancer Psychosocial Standards...

The Standards for Psychosocial Care for Children with Cancer and Their Families ("Standards") are evidence-based guidelines for psychosocial care in pediatric oncology. Care related to the three "Asking and Monitoring" Standards-Assessment of Psychosocial Needs, Assessment of Financial Needs, and Monitoring Neurocognitive Problems-is frequently provided, but community member input regarding the implementation of this care is notably absent in extant literature. The Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) team conducted a mixed-methods, community-engaged study to understand parent and provider perceptions and prioritization of these three Standards.

A two-round Delphi technique identified consensus on prioritization of the Standards by pediatric oncology providers (medical and psychosocial) and parents. The survey included optional free-text responses to explain their reasoning for their selections. Data were analyzed using an iterative qualitative process.

Responses were included from 129 parents and 62 providers. For Assessment of Psychosocial Needs and Assessment of Financial Needs, parent responses focused on immediate consequences when the Standards are not provided, while providers described their relevance to broader medical and psychosocial outcomes. For Monitoring Neurocognitive Problems, providers noted its importance because families prioritize it, while parents reflected on a lack of understanding and attention to neurocognitive deficits.

While parents shared concerns about both immediate and long-term consequences if Standards-aligned care is not delivered, providers emphasized broader or longer term consequences. Findings reflect the critical importance of frequent, structured monitoring of psychosocial and financial needs and more comprehensive monitoring for neurocognitive deficits.