Recruitment and retention of adolescent participants in HIV research: findings from the REACH (Reaching for Excellence in Adolescent Care and Health) Project

Abstract

Purpose: To evaluate the importance of 13 items in the recruitment and retention of HIV-positive and HIV-negative adolescent participants in a longitudinal study (REACH study).

Methods: A confidential, self-administered, visual analog, cross-sectional survey was offered to active participants (November 1999-August 2000) with 438 subjects (86%) participating. Sixty-six percent of the cohort were HIV-positive and 34% were HIV-negative with a mean age of 17 years, and 76% were female. Subjects were asked to recall the importance they placed on 13 items in deciding to join the REACH study (recruitment) and to remain on study (retention). Factors that might explain the judgment placed on the items were analyzed using the nonparametric Wilcoxon Rank-Sum test or the Kruskall-Wallis test.

Results: The five most important factors for study recruitment were identical to those chosen for retention by participants. The factors were: (a) quality medical care, (b) caring staff, (c) health education, (d) privacy/confidentiality, and (e) altruism. Items judged least important were social activities, compensation, transportation, and food/meals. Subject characteristics (gender, age, HIV status) were not associated with statistically different mean judgment scores at recruitment and retention, although clinical site showed significant variation. Factors that could render subjects vulnerable (health insurance, family finances) were not associated with related items.

Conclusions: Adolescents found quality health care and care team characteristics critically important in considering research participation. Attention to privacy and the opportunity to be altruistic were also important. Compensation for participation was not a significant factor for recruitment and retention of this adolescent cohort. This study demonstrates that adolescents apply sound criteria in evaluating research participation and do not appear to be unduly affected by compensation.