Evaluation of the Pediatric Research Participation Questionnaire for Measuring Attitudes Toward Cancer Clinical Trials among Adolescents and Young Adults.

TitleEvaluation of the Pediatric Research Participation Questionnaire for Measuring Attitudes Toward Cancer Clinical Trials among Adolescents and Young Adults.
Publication TypeJournal Article
Year of Publication2019
AuthorsBarakat LP, Stevens E, Li Y, Reilly A, Deatrick JA, Goldstein NE, Schwartz LA
JournalJ Adolesc Young Adult Oncol
Date Published2019 Apr 26
ISSN2156-535X
Abstract

Reasons for the relatively low rates of adolescent and young adults (AYA) enrollment in cancer clinical trials in the United States require further empirical examination. In addition to structural factors such as lack of access and insurance barriers, attitudes toward clinical trials may be important to consider. This study aimed to evaluate and validate the Pediatric Research Participation Questionnaire (PRPQ)-a measure of attitudes to clinical trials adapted for AYA (15-29) with cancer and their caregivers. One hundred twenty-four AYA and 94 caregivers completed the PRPQ-AYA and measures of clinical trial knowledge and developmental/emotional maturity. Factor analysis evaluated the PRPQ-AYA structure, interitem reliability was computed, and Pearson correlations examined associations of validation measures with factor scores and computed scores reflecting perceived barriers, perceived benefits, and decision balance. Confirmatory factor analysis did not confirm the prior PRPQ factor structure. Exploratory factor analysis suggested a new four-factor structure for: AYA (1) trust/mistrust, (2) barriers/costs, (3) support for participation, and (4) incentives; and caregivers (1) trust/access, (2) mistrust/costs, (3) support for participation, and (4) risks to AYA. Factor scores and barriers, benefits, and decision balance scores demonstrated acceptable interitem reliability and were significantly correlated with clinical trial knowledge and emotional maturity in the expected direction. PRPQ-AYA factor structure for AYA and caregivers varied and should be interpreted cautiously due to limited power. Simple solutions of perceived benefits, perceived barriers, and decision balance were reliable and valid and provide important information to address and engage AYA through the clinical trial informed consent process.

DOI10.1089/jayao.2018.0144
Alternate JournalJ Adolesc Young Adult Oncol
PubMed ID31025898