Following young people with perinatal HIV infection from adolescence into adulthood: the protocol for PHACS AMP Up, a prospective cohort study.
The first generation of adolescents born with HIV infection has reached young adulthood due to advances in treatment. It is important to continue follow-up of these individuals to assess their long-term medical, behavioural and mental health and ability to successfully transition to adulthood while coping with a chronic, potentially stigmatising condition. To accomplish this, and to maintain their interest in long-term research participation, we need to accommodate the changing lifestyles and interests of young adult study participants while ensuring valid data collection. We report the protocol for Pediatric HIV/AIDS Cohort Study (PHACS) Adolescent Master Protocol (AMP) Up, a prospective cohort study enrolling young adult participants for long-term follow-up.



AMP Up is recruiting 850 young men and women 18 years of age and older-600 perinatally HIV-infected and a comparison group of 250 perinatally HIV-exposed, uninfected-at 14 clinical research sites in the USA and Puerto Rico. Recruitment began in April 2014 and is ongoing, with 305 participants currently enrolled. Planned follow-up is ≥6 years. Data are collected with a flexible hybrid of online and in-person methods. Outcomes include: transition to adult clinical care and retention in care; end-organ diseases; malignancies; metabolic complications; sexually transmitted infections; reproductive health; mental health and neurocognitive functioning; adherence to antiretroviral treatment; sexual behaviour and substance use; hearing and language impairments; and employment and educational achievement.



The study received ethical approval from the Harvard T.H. Chan School of Public Health's institutional review board (IRB), and from the IRBs of each clinical research site. All participants provide written informed consent; for cognitively impaired individuals with legally authorised representatives, legal guardian permission and participant assent is obtained. Findings will be disseminated through peer-reviewed journals, conference presentations and participant summaries.
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Katherine
K
Tassiopoulos
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Kunjal
K
Patel
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Julie
J
Alperen
Center for Biostatistics in AIDS Research, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Deborah
D
Kacanek
Frontier Science and Technology Research Foundation, Inc, Amherst, New York, USA.
Angela
A
Ellis
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Claire
C
Berman
Division of AIDS Research, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland, USA.
Susannah M
SM
Allison
Maternal and Pediatric Infectious Disease Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland, USA.
Rohan
R
Hazra
Department of Pediatric Infectious Diseases, University of Colorado, Children's Hospital Colorado, Aurora, Colorado, USA.
Emily
E
Barr
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Krystal
K
Cantos
Frontier Science and Technology Research Foundation, Inc, Amherst, New York, USA.
Suzanne
S
Siminski
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Michael
M
Massagli
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
Jose
J
Bauermeister
Department of Pediatrics, Tulane University School of Medicine, New Orleans, Louisiana, USA.
Danish Q
DQ
Siddiqui
Children's Diagnostic & Treatment Center, Inc., Fort Lauderdale, Florida, USA.
Ana
A
Puga
Department of Pediatrics, Tulane University School of Medicine, New Orleans, Louisiana, USA.
Russell
R
Van Dyke
Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
George R
GR
Seage
D000293:Adolescent; D003376:Counseling; D005260:Female; D005500:Follow-Up Studies; D015658:HIV Infections / Q000188:drug therapy / Q000453:epidemiology* / Q000523:psychology; D015438:Health Behavior; D006801:Humans; D018445:Infectious Disease Transmission, Vertical / Q000706:statistics & numerical data*; D008297:Male; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data*; D011159:Population Surveillance; D011446:Prospective Studies; D011647:Puerto Rico / Q000453:epidemiology; D060305:Transition to Adult Care; D014481:United States / Q000453:epidemiology; D055815:Young Adult
EPIDEMIOLOGY; PUBLIC HEALTH