The Adults and Adolescents with Perinatal HIV (AALPHI) cohort study investigated the impact of living with HIV and taking long-term antiretroviral therapy (ART) on several domains, including cognition, psychosocial issues, cardiac function and sexual and reproductive health. Two groups of young people were recruited: 319 young people with perinatally acquired HIV who have been followed in childhood through CHIPS, and 101 HIV negative affected individuals who had a parent or sibling with HIV. Two interviews took place over a 5 year period from 2012 to 2017.
Analyses are ongoing and some findings have been published. The AALPHI study showed that for many areas of focus, the health of HIV positive young people was similar to that for HIV negative young people in the study, and sometimes also the same as for the general population of young people.
In an analysis examining adherence to antiretroviral therapy treatment two measures of adherence were used: 3 day non-adherence and last month non-adherence. Taking a combination of antiretroviral medicines that included a boosted protease inhibitor, and poorer quality of life, were found to be associated with 3 day non-adherence. Having told more people about one’s HIV status, worse self-perception about having HIV, and taking a combination of antiretroviral medicines that included a boosted protease inhibitor were associated with last month non-adherence. This work was published in the Journal of the Association of Nurses in AIDS Care in 2020 (doi: 10.1097/JNC.0000000000000171).
Pulse wave velocity measurements were taken as a measure of possible future cardiovascular disease. By late adolescence, young people living with perinatal HIV had worse scores compared to their HIV negative peers. The analysis found that having perinatal HIV, being male, older age, having a high blood pressure and nicotine use on the day of measurement were associated to worse pulse wave velocity scores. This work was presented in a poster at the European Society for Paediatric Infectious Diseases meeting in 2020.
In terms of cognitive function, test results were similar for HIV positive young people who had not been severely ill in the past and HIV negative young people, and only mild impairment was evident. However results were a little poorer in young people with vertically acquired HIV who had been very sick in the past. This work was published in Clinical Infectious Diseases in 2016 (doi: 10.1093/cid/ciw568).
In terms of mental health, two analyses have been carried out, examining self-harm, and anxiety and depression. In the first analysis, self-harm was found to be common in both young people living with perinatal HIV and HIV negative young people. Reassuringly, however, both groups did not appear to be at an increased risk compared to young people of a similar age in the general public. This analysis was published in BMC Public Health in 2019 (doi: 10.1186/s12889-019-7424-7).
A second mental health analysis of anxiety and depression data within the cohort suggested that levels of these two factors did not differ by HIV status, although a few young people did have very high scores, highlighting the need for continued support for those most at risk. This work was published in AIDS Care in 2018 (doi: 10.1080/09540121.2018.1441972).
Sexual health and behaviours of young people in AALPHI were also investigated. 54% of young people in AALPHI were sexually active. Age at first sex and number of sexual partners were similar between young people living with HIV and HIV negative young people. Older young people, male sex, worse deprivation score, worse quality of life and alcohol and/or drugs were associated with ever having sex. Twelve of 30 young people who reported having unprotected sex had at least one HIV viral load ≥200c/mL. This work was published in PLOS One in 2018 (doi: 10.1371/journal.pone.0205597).
The experience of transitioning from paediatric to adult HIV care was examined in young people living with perinatal HIV in AALPHI. The analysis found that transition discussions occurred before movement from paediatric to adult care. Further education around ART, potential side effects, and CD4 T cell count/viral load knowledge was required. This work was published in HIV Nursing in 2020.
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Young people were involved from the start of the AALPHI study. CHIVA ran a focus group with young people to design the AALPHI logo. The young people also designed a poster to be used to help recruit young people into the study.
Focus groups were also carried out in schools and HIV support groups to pilot the interview questionnaires to make sure that they were acceptable to young people. Changes to the order of questions and format of the interviews were made following feedback from young people. The positive feedback from young people in the pilot also gave the researchers confidence in the acceptability of in the questions being asked, despite covering some tricky and quite personal topics.
In addition, two newsletters were produced by the AALPHI team for participants in the study and these were reviewed by young people prior to being finalised.
We felt it was essential that young people should be the advocates of the AALPHI study and its findings. We wanted them to take ownership and be empowered to decide how they disseminated the key messages to young people living with perinatal HIV, HIV negative young people that participated in the study and to the wider HIV community. We invited members of the Youth Trials Board, (YTB) at the Children’s HIV Association (CHIVA) and some young people who had taken part in AALPHI to attend three workshops. We provided them with the key AALPHI research findings and asked them to develop them into a format that was more easily accessible for young people.