title: Participation and retention of youth with perinatal HIV infection in mental health research studies: the IMPAACT P1055 psychiatric comorbidity study.
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.
authors.affiliation: Center for Biostatistics in AIDS Research, Harvard School of Public Health, Boston, MA 02115, USA. paige@sdac.harvard.edu
authors.forename: Paige L
authors.initials: PL
authors.lastname: Williams
authors.forename: Miriam
authors.initials: M
authors.lastname: Chernoff
authors.forename: Konstantia
authors.initials: K
authors.lastname: Angelidou
authors.forename: Pim
authors.initials: P
authors.lastname: Brouwers
authors.forename: Deborah
authors.initials: D
authors.lastname: Kacanek
authors.forename: Nagamah S
authors.initials: NS
authors.lastname: Deygoo
authors.forename: Sharon
authors.initials: S
authors.lastname: Nachman
authors.forename: Kenneth D
authors.initials: KD
authors.lastname: Gadow
mesh_terms: D000293:Adolescent; D019380:Anti-HIV Agents / Q000627:therapeutic use; D002648:Child; D015897:Comorbidity; D005260:Female; D015658:HIV Infections / Q000150:complications / Q000188:drug therapy / Q000523:psychology* / Q000635:transmission; D006801:Humans; D018445:Infectious Disease Transmission, Vertical; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology*; D008603:Mental Health; D010358:Patient Participation; D018579:Patient Selection; D045808:Refusal to Participate; D012725:Sexual Behavior
chemical_list: D019380:Anti-HIV Agents