Search

Identifying which young people living with perinatally acquired HIV (PHIV) are less likely to engage in care is crucial to allow targeted interventions to support them to attend clinic. We adapted an existing Engagement in Care (EIC) algorithm for adults with HIV in England, for use in young people. We applied it to data from young people with PHIV in the Adolescents and Adults Living with Perinatal HIV (AALPHI) cohort. The algorithm predicts the timing of the next scheduled clinic visit, within 1–6 months of current visit, based on routine clinical data. Follow-up was 12-months from AALPHI baseline interview. Each person-month was classified as engaged in care or not. Logistic regression models (allowing for clustered data) were used to explore baseline characteristics associated with being engaged in care, adjusting for a priori variables (time from interview, sex, age, ethnicity, country of birth). Potential characteristics were across 7 domains: sociodemographic; risk behaviour practices; mental health; cognition; clinic setting; HIV management and experience; and HIV clinical markers. Of 316 young people, 187(59%) were female, 271(86%) of black ethnicity and 184(58%) born abroad. At baseline, median [IQR] age was 17[15–18] years, and 202(69%) had viral load ≤50 copies/ml(c/mL). 87% of 3,585 person-months were classified as engaged in care. Characteristics independently associated with poorer odds of being engaged in care were: Asian/mixed/other ethnicity, vs. black ethnicity (OR 0.44, 95% CI 0.25, 0.78, p = 0.02); ever self-harmed, vs. not (OR 0.55, 95% CI 0.32, 0.95, p = 0.03); on antiretroviral therapy (ART) and self-assessed bad/not so good adherence (OR 0.46, 95% CI 0.25, 0.84) or not on ART (OR 0.64, 95% CI 0.64, 1.21) vs. on ART and good/excellent adherence (p = 0.04)); baseline VL>50c/mL, vs VL≤50c/mL (OR 0.47, 95% CI 0.30, 0.75, p = 0.002). These characteristics can help identify individuals requiring enhanced support to maintain service engagement. [ABSTRACT FROM AUTHOR]

Background: The Adolescents and Adults Living with Perinatal HIV (AALPHI) study is one of only three cohort studies worldwide evaluating the impact of HIV on young people living with perinatal HIV (PLHIV) relative to a comparable group of HIV negative young people in close relationship with an HIV positive individual, for example, their mother, sibling or partner. This project aimed to engage young people with the AALPHI study findings, help them take ownership, and decide how they would disseminate the key messages to both study participants and to the wider community. Methods: In brief, 318 PLHIV and 100 HIV negative adolescents participated in AALPHI, where they each were interviewed twice, around two years apart. They were asked a wide range of psychosocial and risk behaviour questions and their cognitive function was assessed. We invited three AALPHI participants and seven members of the Youth Trials Board at the Children's HIV Association (CHIVA) to attend up to four workshops. They were provided with the key AALPHI research findings and asked to develop them into a format that was accessible and understandable for young people. Some who had not participated before formed a group in the fourth dissemination workshop that confirmed the most important concepts and results. Results: The young people decided to develop a film and a leaflet about the AALPHI findings and co-produced them with a film maker and graphic designer. Challenges included working with the film maker and the venue for the first three dissemination workshops was an office space which was not ideal. Conclusion: Engaging young people in the dissemination of the AALPHI findings ensured the results were communicated in a way that was more likely to be relevant, accessible and useful to those affected by the study. This project demonstrates how young people in potentially stigmatised areas of care, such as HIV, can be involved in research dissemination. Plain English summary: Informing young people of the results of a study in which they participated, in a manner they can understand, is an ethical minimum. Increasingly, young people themselves may be involved in this dissemination activity, to ensure that study results are communicated in a way which is more likely to be relevant, accessible and useful to those directly affected by the study. The Adolescents and Adults Living with Perinatal HIV (AALPHI) study is a cohort study evaluating the impact of HIV on young people living with perinatal HIV (PLHIV) relative to HIV negative young people affected by HIV. This project aimed to engage PLHIV with the AALPHI findings, and help them take ownership of their dissemination, deciding how to communicate key messages to study participants and the wider community. We invited three AALPHI participants and seven members of a Youth Trials Board at the Children's HIV Association, (CHIVA), to attend four workshops. We provided them with key AALPHI findings and asked them to develop them into an understandable format for young people. They co-produced the content for a film and a leaflet about the results, working with a film maker and graphic designer. The 4th comprised of three workshop participants and seven new participants from CHIVA. This work shows that young PLHIV can be part of the process of evaluating study results and guiding dissemination by creating outputs that align with young people's priorities. This area of work could be further developed in the future through direct evaluation of participant involvement. [ABSTRACT FROM AUTHOR]

Background: Evidence suggests that engagement in care (EIC) may be worse in young people living with perinatal HIV (YPLPHIV) compared to adults or children living with HIV. We took a published EIC algorithm for adults with HIV, which takes patients' clinical scenarios into account, and adapted it for use in YPLPHIV in England, to measure their EIC. Methods: The adult algorithm predicts when in the next 6 months the next clinic visit should be scheduled, based on routinely collected clinical indicators at the current visit. We updated the algorithm based on the latest adult guidelines at the time, and modified it for young people in paediatric care using the latest European paediatric guidelines. Paediatric/adolescent HIV consultants from the UK reviewed and adapted the resulting flowcharts. The adapted algorithm was applied to the Adolescent and Adults Living with Perinatal HIV (AALPHI) cohort in England. Data for 12 months following entry into AALPHI were used to predicted visits which were then compared to appointment attendances, to measure whether young people were in care in each month. Proxy markers (e.g. dates of CD4 counts, viral loads (VL)) were used to indicate appointment attendance. Results: Three hundred sixteen patients were in AALPHI, of whom 41% were male, 82% of black African ethnicity and 58% born abroad. At baseline (time of AALPHI interview) median [IQR] age was 17 [15–18] years, median CD4 was 597 [427, 791] cells/µL and 69% had VL ≤50c/mL. 10 patients were dropped due to missing data. 306 YPLPHIV contributed 3,585 person months of follow up across the 12 month study in which a clinic visit was recorded for 1,204 months (38/1204 dropped due to missing data). The remaining 1,166 months were classified into 3 groups: Group-A: on ART, VL ≤ 50c/mL—63%(734/1,166) visit months, Group-B: on ART, VL > 50c/mL—27%(320/1,166) Group-C: not on ART-10%(112/1,166). Most patients were engaged in care with 87% (3,126/3,585) of months fulfilling the definition of engaged in care. Conclusions: The adapted algorithm allowed the varying clinical scenarios of YPLPHIV to be taken into account when measuring EIC. However availability of good quality surveillance data is crucial to ensure that EIC can be measured well. [ABSTRACT FROM AUTHOR]

Learning and memory are important for successful education and career progression. We assess these functions in young people (YP) with perinatal HIV (PHIV) (with or without a previous AIDS-defining illness) and a comparable group of HIV-negative YP. 234 PHIV and 68 HIV-negative YP completed 9 tests; 5 National Institutes of Health (NIH) Toolbox tests (2 executive function, 1 speed of information processing, 2 memory); 2 Hopkins Verbal Learning Test Revised (HVLT-R) (learning (L), delayed recall (R)), and 2 verbal application measures. Z-scores for each test were calculated using normative data and averaged by domain where appropriate. The effect of predictors on test scores in the three domains with the lowest z-scores were analysed using linear regression. 139(59%) and 48(71%) PHIV and HIV-negative YP were female, 202(86%) and 52(76%) Black, and median age was 19 [17, 21] and 18 [16, 21] years respectively. 55(24%) PHIV had a previous Center for Disease Control and Prevention (CDC) class C AIDS-defining diagnosis (PHIV/C). For HVLT-R, there was a trend towards PHIV/C YP having the lowest mean z-scores (L -1.5 (95% CI -1.8,-1.2), R -1.7 (-2.0,-1.4)) followed by PHIV without a CDC C diagnosis (L -1.3 (-1.4,-1.1), R -1.4 (-1.5,-1.2)) and then the HIV-negative group (L -1.0 (-1.3,-0.7), R -1.1 (-1.3,-0.8)); all were greater than 1 SD below the reference mean. The same trend was seen for verbal application measures; however, z-scores were within 1 SD below the reference mean. NIH Toolbox tests were similar for all groups. In multivariable analyses PHIV/C and Black ethnicity predicted lower HVLT-R scores. Black ethnicity also predicted lower executive function scores, however each year increase in age predicted higher scores. In conclusion, cognitive performance in verbal learning and recall fell below population normative scores, and was more pronounced in PHIV/C, supporting wider findings that earlier antiretroviral therapy initiation, before the occurrence of AIDS-defining conditions, may protect aspects of cognitive development. [ABSTRACT FROM AUTHOR]