Decision-Making for Pediatric and Adolescent/Young Adult (AYA) Cancer Clinical Trials: An Integrative Review of Qualitative Literature

Abstract

Background: Cancer clinical trials are critical to advancing pediatric oncology care, but participation varies across age and sociodemographic groups. Understanding decision-making factors influencing pediatric and adolescent/young adult (AYA) participation is essential to addressing these disparities. This integrative review synthesizes qualitative studies to explore decision-making factors affecting participation in cancer clinical trials, identify gaps, and propose strategies to promote equitable involvement. Method: Using Whittemore and Knafl’s integrative review methodology, comprehensive searches were conducted in PubMed, Scopus, CINAHL, Medline, and Web of Science, with additional studies identified through ancestral searching. Included studies were qualitative or mixed-methods, U.S.-based, and published from 2010 to 2024. Methodological quality was assessed using the Critical Appraisal Skills Programme (CASP) checklist, and thematic patterns were analyzed through constant comparison and qualitative synthesis tools. Results: Seven studies met inclusion criteria. Systemic, interpersonal, and individual factors were identified as influential in decision-making. Key themes influencing participation included finances and logistics, communication, relationships, role responsibilities, emotional distress, and perceived benefit. Discussion: Financial burdens, logistical challenges, and communication barriers emerge as major actionable obstacles. Expanding financial assistance programs, decentralizing trials, and implementing structured communication tools can improve access and support informed decision-making. Future research should explore the experiences of patients who were never offered a trial and assess the impact of financial and logistical support interventions to develop more equitable and effective enrollment and outreach strategies. Addressing these barriers through targeted policy and practice changes can create a more accessible clinical trial landscape for pediatric and AYA patients with cancer.