Collected in Senegal from 2015 to 2020, the dataset comprises 169 patients (subjects), children and adolescents living with HIV since childhood, and 250 demographic, psychosocial and virological descriptive variables.
The data are longitudinal in nature, since for each patient the value of the viral load before HIV disclosure status, during the first year post-disclosure and during the second year post-disclosure is recorded. In other words, three successive measures. The 3 measures are presented in columns (not rows). These data were collected as part of a research project from 1 January 2015 to 31 December 2016, and then in routine practice until 31 December 2020. Since 2021, the data has been subject to in-depth cleaning and a search for missing data (viral load results). They were analysed retrospectively in 2022. An article was then written, as summarized below.
Research abstract
HIV-status disclosure to children and adolescents living with HIV is undoubtedly one of the greatest challenges facing health care providers (HCP) in sub-Saharan Africa. The absence of standardised protocols and appropriate training for HIV disclosure and fears about its negative effects on adherence to antiretroviral treatment (ART) and follow-up have been identified as some of the barriers limiting disclosure to children and adolescents. We developed a standardised HIV-disclosure intervention involving HCP, caretakers and children at the national pediatric clinic in Dakar, Senegal. This retrospective analysis describes the standardised intervention and the impact of improved disclosure of HIV status to children and adolescents on retention in care and virological suppression.
HCP were trained to use WHO-recommended practices for HIV disclosure. The intervention was structured around group preparation of caretakers and children during a pre-disclosure period, followed by a formal, full disclosure involving the child, caretaker and HCP, and then post-disclosure follow-up to 24 months. For inclusion in the intervention, children had to be at least seven years old, with no mental disorders and with a reliable caretaker. Change in virological status was assessed only in children on ART, with at least one viral load in the pre- and post-disclosure periods using the MacNemar test for matched samples. Factors associated with post-disclosure virological failure (viral load > 1000 copies/mL) were investigated in the participants' characteristics using a logistic regression model.
From 2015 to 2020, 169 children and adolescents were enrolled in the intervention (sex ratio: 1.2), of which 77% were on ART. HIV status was disclosed to all enrollees at a median age of 12.8 years (IQR = 11.9 – 14.1). HCP carried out all disclosures. Full disclosure (including the mode of transmission to the child) was possible for 85% of participants. At 24 months post-disclosure, the retention rate was 98%. All enrollees not on ART initiated therapy within one month (0 – 3) post disclosure. Of the 115 children on ART at disclosure, and with pre- and post-disclosure viral load measurements available, the proportion demonstrating virological success (78%) remained unchanged (MacNemar's paired test, 24 months p= 0.99). Virological failure at disclosure (aOR= 2.8, 95% CI: 1.1 – 7.5) and being on second-line ART at disclosure (2.8, 1.2 – 6.7) were associated with virological failure at 24 months.
This study shows that it is possible to involve children who have achieved virological success, even at a young age, in a comprehensive HIV-disclosure intervention without a major impact on their medium-term adherence to ART and retention in care. This innovative intervention for preparing and supporting children and adolescents and their caretakers for HIV disclosure provides a valuable scientific and experiential model for implementing and evaluating good disclosure practices.
(2023-08-04)
