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

Anna Sparrow1, Michelle Kelly1, Jennifer Yost1

  • 1M. Louise Fitzpatrick College of Nursing, Villanova University, Villanova, PA, USA.

Insights

Financial and logistical barriers significantly impact pediatric and adolescent/young adult cancer clinical trial participation. Addressing these issues through improved financial aid and decentralized trials is key to promoting equitable access for young cancer patients.

Area of Science:

  • Oncology
  • Clinical Trials
  • Health Disparities

Background:

  • Pediatric cancer clinical trial participation is crucial for advancing care but shows disparities.
  • Understanding decision-making factors is essential for equitable involvement.
  • Qualitative studies are vital for exploring patient and family experiences.

Purpose of the Study:

  • To synthesize qualitative research on factors influencing pediatric and adolescent/young adult (AYA) cancer clinical trial participation.
  • To identify gaps in current understanding and propose strategies for equitable involvement.
  • To inform policy and practice for improved clinical trial access.

Main Methods:

  • Integrative review using Whittemore and Knafl's methodology.
  • Searches across major databases (PubMed, Scopus, CINAHL, Medline, Web of Science) from 2010-2024.
  • Qualitative or mixed-methods, U.S.-based studies assessed with CASP checklist; thematic analysis.

Main Results:

  • Seven studies met inclusion criteria, identifying systemic, interpersonal, and individual decision-making factors.
  • Key themes included finances, logistics, communication, relationships, emotional distress, and perceived benefit.
  • Financial burdens, logistical challenges, and communication barriers were prominent obstacles.

Conclusions:

  • Actionable strategies include expanding financial assistance, decentralizing trials, and using structured communication tools.
  • Addressing these barriers can improve access and support informed decision-making for pediatric and AYA cancer patients.
  • Further research needed on patients not offered trials and intervention impacts for equitable strategies.

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