Successful Techniques for Retaining a Cohort of Infants and Children Born to HIV-Infected Women: the Prospective P2C2 HIV Study

• Type of Material: Article
• Authors: Kimberly Geromanos, Columbia Presbyterian Medical Center; Susan N. Sunkle, Cleveland Clinic Foundation; Mary Beth Mauer, Baylor College of Medicine; Diane Carp, Mount Sinai School of Medicine; Jessica Ancker, Cleveland Clinic Foundation; Weihong Zhang, Cleveland Clinic Foundation; Kirk Easley, Emory University; Mark D. Schluchter, Cleveland Clinic Foundation; Claudia A. Kozinetz, Texas Children’s Hospital; Robert B. Mellins, Columbia University
• Language: English
• Date: 2004-07
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2004 Association of Nurses in AIDS Care.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1177/1055329003256653
• Title of Journal or Parent Work: Journal of the Association of Nurses in AIDS Care
• ISSN: 1055-3290
• Volume: 15
• Issue: 4
• Start Page: 48
• End Page: 57
• Grant/Funding Information: This research was supported by Contracts NO1-HR-96037, 96038, 96040, 96041, 96042, and 96043 from the National Heart, Lung, and Blood Institute and in part by NIH General Research Center Grants RR-00188, RR-02172, RR-00533, RR-00071, RR-00645, RR-00865, and RR-00043.
• Keywords: AIDS; retention; pediatric HIV
• Research Categories: Health Sciences, General; Health Sciences, Epidemiology

Abstract

Retaining subjects from disadvantaged populations in long-term studies is necessary to obtain high-quality data. This article presents cumulative retention rates from a 5-year prospective cohort study, the Pediatric Pulmonary and Cardiovascular Complications of Vertically Transmitted HIV Infection study. It also presents results of a cross-sectional qualitative survey about factors that induced caregivers to stay in the study. Although the repeated study visits were long and uncomfortable, cumulative retention among the 298 HIV-infected children was 80%. Incentives considered important by the caregivers included phone contact with nurse coordinators, nurse coordinators accompanying the caregiver and child during visits, phone reminders for appointments, help with scheduling, meals and transportation, access to health care, and relationships with staff. Thus, the high follow-up rate was in part due to nurses’ efforts to reduce the study’s burden on the families, provide tangible and intangible incentives, and establish personal relationships with families.