Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2013 Jul 1;63(3):401-9.
doi: 10.1097/QAI.0b013e318293ad53.

Participation and retention of youth with perinatal HIV infection in mental health research studies: the IMPAACT P1055 psychiatric comorbidity study

Paige L Williams  1 , Miriam Chernoff, Konstantia Angelidou, Pim Brouwers, Deborah Kacanek, Nagamah S Deygoo, Sharon Nachman, Kenneth D Gadow; International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) Group P1055 Study Team
Collaborators, Affiliations

Participation and retention of youth with perinatal HIV infection in mental health research studies: the IMPAACT P1055 psychiatric comorbidity study

Paige L Williams et al. J Acquir Immune Defic Syndr. .

Abstract

Background: Obtaining accurate estimates of mental health problems among youth perinatally infected with HIV (PHIV) helps clinicians develop targeted interventions but requires enrollment and retention of representative youth into research studies.

Methods: The study design for IMPAACT P1055, a US-based, multisite prospective study of psychiatric symptoms among PHIV youth and uninfected controls aged 6 to 17 years old, is described. Participants were compared with nonparticipants by demographic characteristics and reasons were summarized for study refusal. Adjusted logistic regression models were used to evaluate the association of psychiatric symptoms and other factors with loss to follow-up (LTFU).

Results: Among 2281 youth screened between 2005 and 2006 at 29 IMPAACT research sites, 580 (25%) refused to participate, primarily because of time constraints. Among 1162 eligible youth approached, 582 (50%) enrolled (323 PHIV and 259 Control), with higher participation rates for Hispanic youth. Retention at 2 years was significantly higher for PHIV than Controls (84% vs 77%, P = 0.03). In logistic regression models adjusting for sociodemographic characteristics and HIV status, youth with any self-assessed psychiatric condition had higher odds of LTFU compared with those with no disorder (adjusted odds ratio = 1.56, 95% confidence interval: 1.00 to 2.43). Among PHIV youth, those with any psychiatric condition had 3-fold higher odds of LTFU (adjusted odds ratio = 3.11, 95% confidence interval: 1.61 to 6.01).

Conclusions: Enrollment and retention of PHIV youth into mental health research studies is challenging for those with psychiatric conditions and may lead to underestimated risks for mental health problems. Creative approaches for engaging HIV-infected youth and their families are required for ensuring representative study populations.

PubMed Disclaimer

Conflict of interest statement

Conflict of interest: the authors assert that they have no conflicts related to this manuscript.

Figures

Figure 1
Figure 1
P1055 Study Design Flowchart
See this image and copyright information in PMC

References

    1. Brown LK, Lourie KJ, Pao M. Children and adolescents living with HIV and AIDS: a review. J Child Psychol Psychiatry. 2000;41:81–96. - PubMed
    1. Jeremy RJ, Kim S, Nozyce M, et al. Neuropsychological functioning and viral load in stable antiretroviral therapy-experienced HIV-infected children. Pediatrics. 2005;115:380–7. - PubMed
    1. Mellins CA, Brackis-Cott E, Dolezal C, et al. Psychiatric disorders in youth with perinatally acquired human immunodeficiency virus infection. Pediatr Infect Dis J. 2006;25:432–7. - PubMed
    1. Nozyce ML, Lee SS, Wiznia A, et al. A behavioral and cognitive profile of clinically stable HIV-infected children. Pediatrics. 2006;117:763–70. - PubMed
    1. Scharko AM. DSM psychiatric disorders in the context of pediatric HIV/AIDS. AIDS Care. 2006;18:441–5. - PubMed

Publication types

Substances