Journal Article

Development of an international data repository and research resource: the Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive

Kassam-Adams, Nancy, Palmieri, Patrick A., Meiser-Stedman, Richard, Delahanty, Douglas L., Landolt, Markus A., Marsac, Meghan L., Kenardy, Justin A., Nixon, Reginald D. V.

2020

Overview

Background: Studies that identify children after acute trauma and prospectively track risk/protective factors and trauma responses over time are resource-intensive; small sample sizes often limit power and generalizability. The Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive was created to facilitate more robust integrative cross-study data analyses. Objectives: To (a) describe creation of this research resource, including harmonization of key variables; (b) describe key study- and participant-level variables; and (c) examine retention to follow-up across studies. Methods: For the first 30 studies in the Archive, we described study-level (design factors, retention rates) and participant-level (demographic, event, traumatic stress) variables. We used Chi square or ANOVA to examine study- and participant-level variables potentially associated with retention. Results: These 30 prospective studies (N per study = 50 to 568; overall N = 5499) conducted by 15 research teams in 5 countries enrolled children exposed to injury (46%), disaster (24%), violence (13%), traffic accidents (10%), or other acute events. Participants were school-age or adolescent (97%), 60% were male, and approximately half were of minority ethnicity. Using harmonized data from 22 measures, 24% reported significant traumatic stress ≥1 month post-event. Other commonly assessed outcomes included depression (19 studies), internalizing/externalizing symptoms (19), and parent mental health (19). Studies involved 2 to 5 research assessments; 80% of participants were retained for ≥2 assessments. At the study level, greater retention was associated with more planned assessments. At the participant level, adolescents, minority youth, and those of lower socioeconomic status had lower retention rates. Conclusion: This project demonstrates the feasibility and value of bringing together traumatic stress research data and making it available for re-use. As an ongoing research resource, the Archive can promote 'FAIR' data practices and facilitate integrated analyses to advance understanding of child traumatic stress.

• Publisher: Taylor & Francis,Taylor & Francis Ltd,Taylor & Francis Group
• Subject: análisis integrado de información / Archives & records / Chi-square test / child and adolescent / Clinical / data sharing / Estrés traumático / FAIR data / FAIR数据 / información FAIR / integrative data analysis / intercambio de datos / niños y adolescentes / Retention / The first 30 prospective studies (overall N=5499) contributing datasets to the PACT/R data archive were conducted by 15 research teams in 5 countries, enrolled children exposed to injury, disaster, violence, traffic accidents, or other acute events, and utilized 22 different measures of posttraumatic stress. Across all datasets, 80% of participants were retained for at least 2 assessments. Using harmonized cross-study data, 24% reported significant traumatic stress 1 month or more post-event.The PACT/R project demonstrates the feasibility and value of archiving and harmonizing traumatic stress research data from multiple studies and making these data available for re-use / Trauma / Traumatic stress / 儿童和青少年 / 创伤应激 / 数据共享 / 综合数据分析