Best practices for recruitment of adolescents for biobanking and precision health research: a retrospective analysis comparing juvenile idiopathic arthritis cases with healthy controls

Pediatric Rheumatology

Patricia Carter¹  Ambreen Rana²  Christina Nguyen²  Jennifer Chiou³  Stefano Tiziani³  Kimberly A. Lewis⁴  Alexandra Garcia⁵  Sharon A. Brown⁵  Shelby Brooks⁶  Nico Osier⁷  Ruy Carrasco⁸ 

[1] Capstone College of Nursing, University of Alabama, 650 University Blvd E, 35401, Tuscaloosa, AL, USA;Dell Children’s Medical Center of Central Texas, 4900 Mueller Blvd, 78723, Austin, TX, USA;Department of Nutritional Sciences, College of Natural Sciences, The University of Texas at Austin, Austin, TX, USA;Department of Physiological Nursing, School of Nursing, University of California at San Francisco, 2 Koret Way, 94143, San Francisco, CA, USA;School of Nursing, The University of Texas at Austin, 1710 Red River St, 78712, Austin, TX, USA;Dell Children’s Medical Center of Central Texas, 4900 Mueller Blvd, 78723, Austin, TX, USA;Department of Physiological Nursing, University of California, San Francisco, 2 Koret Way, 94131, San Francisco, CA, USA;School of Nursing, The University of Texas at Austin, 1710 Red River St, 78712, Austin, TX, USA;School of Nursing, The University of Texas at Austin, 1710 Red River St, 78712, Austin, TX, USA;Dell Children’s Medical Center of Central Texas, 4900 Mueller Blvd, 78723, Austin, TX, USA;School of Nursing, The University of Texas at Austin, 1710 Red River St, 78712, Austin, TX, USA;Department of Neurology, Dell Medical School, The University of Texas at Austin, Austin, TX, USA;Texas A&M University, 400 Bizzell St.,, 77843, College Station, TX, USA;

关键词: Healthy controls;    Adolescents;    Biobehavioral study;    Precision health;    Juvenile idiopathic arthritis;    Metabolomics;    Recruitment;    Clinical Research;    Biobanking;   

DOI  :  10.1186/s12969-021-00652-9

来源: Springer

【 摘 要 】

BackgroundPrecision health in adolescents relies on the successful collection of data and biospecimens from an adequately sized sample of cases and comparison group(s), often healthy controls, to answer the research question. This research report describes the recruitment strategy, enrollment rates, and approach utilized in a successful biobehavioral research study. The study was designed to examine key health indicators in adolescents (13-17 years of age) with juvenile idiopathic arthritis (JIA) compared to a control group of healthy adolescents. The purpose of this analysis is to establish best practices and identify strategies to overcome barriers to recruitment of older adolescents, an age group that tends to be underrepresented in research studies.MethodsA retrospective secondary analysis of data from a parent study about JIA with high consent rates was employed to explore factors affecting enrollment into the biobehavioral study.ResultsOf the 113 subjects who were recruited to the study, 74 met the eligibility criteria and reviewed the consent form. The consented group (n=40) represents 54% of those who were eligible upon initial screening. The rate of project enrollment was 2.7 participants per month. The pediatric rheumatologists referred 85% of the JIA group, and the study’s principal investigator, a nurse scientist, referred 95% of the control group. Typical recruitment strategies, such as posting on social media, distributing flyers, and cold-calling potential participants from the clinic schedule were ineffective for both cases and controls. Barriers to enrollment included scheduling and fear of venipuncture. There were no demographic characteristics that significantly explained enrollment, differentiating between those who agreed to participate compared to those who refused. Successful strategies for enrollment of adolescents into this biobehavioral research study included scheduling study visits on weekends and school holidays; an informed consent and assent process that addressed adolescent fears of venipuncture; including a JIA patient on the study team; and utilizing existing relationships to maximize enrollment efforts.ConclusionsEffective recruitment and enrollment practices were relationship-specific and patient-centered. Researchers should utilize best practices to ensure that precision health for adolescents is advanced.

【 授权许可】

CC BY