Poor health-related quality of life and its associated factors among adolescents living with HIV attending Baylor College of Medicine Children’s Foundation-Mulago

Abstract

Background: Many adolescents are living with HIV globally, with some infections vertically and other sexually acquired. Although most Ugandan adolescents living with HIV are stable on antiretroviral treatment, they still face challenges such as; the need to be on life-long antiretroviral treatment, drug side effects and stigma among others. Adolescents also have other unique challenges including; accelerated physical growth, early sexual debut and marriages, and the urge for self-discovery which often presents a special sexual vulnerability. It is therefore necessary to study their quality of life. We aimed to assess the magnitude of poor health-related quality of life and its associated factors among adolescents living with HIV attending Baylor College of Medicine Children’s Foundation – Mulago. Methods: This was a mixed methods cross-sectional study involving quantitative and qualitative approaches. The quantitative methods involved interviewing adolescents living with HIV using the PedsQLTM 4.0 tool to assess their health-related quality of life (HRQoL) and a semi-structured questionnaire for factors associated with poor HRQoL. The qualitative involved health worker key-informant interviews and in-depth interviews with HIV positive adolescents who had not participated in the quantitative study. Data was entered into EPI-Info 7.2.1 and analyzed with STATA 16.0. Baseline characteristics were presented in tables as frequencies. For quantitative data: an average quality of life score <60% on PedsQL tool denoted poor HRQoL. The percentage of adolescents with poor HRQoL (95%CI) was presented and compared across adolescent background characteristics. Univariate and multivariate models for associated factors were fitted using logistic regression with 5% significance level and both unadjusted and adjusted odds ratios (95%CI) reported. For qualitative data: the notes and recorded audio data were transcribed, transcripts analysed using thematic content approach and findings reported using ‘Consolidated Criteria for Reporting Qualitative Research’ (COREQ) guidelines. Major themes were reported and some responses directly quoted. Results: Four hundred and nine adolescents participated in the quantitative study while the qualitative study had 11 adolescents and 7 health workers. For the quantitative study; of the 409 adolescents, 314 (76.8%) were older adolescents aged 15–19 years and the overall mean age was 16.1 years (SD +/- 2.1). The male to female ratio was 1:1, majority (n=256, 62.6%) had reached higher than primary school levels of education, 369 (90.2%) were currently in school, 3 (0.7%) were already in marital relationships and 314 (76.8%) reported to have been born with the HIV infection. For the qualitative study; out of the 11 adolescents, 63.6% were female and 81.8% were older adolescents aged 15-19years. Out of 403 adolescents who had complete information on the PedsQL quality of life tool, 16 had an average quality of life score of less than 60%, giving a 4% prevalence of poor HRQoL (95%CI:2.4 – 6.3) with school functioning scoring the least at 80.4%. xi Factors that were found to be independently associated with poor HRQoL included; Being a resident in an urban setting (OR=4.6, 95%CI: 1.22 – 17.44, p=0.024), having no formal education (OR=10.5, 95%CI: 1.63 – 67.29, p=0.013), an adolescent perceiving it not easy to access antiretroviral drugs (OR=5.4, 95%CI: 1.37 – 21.13, p=0.015) and having a perceived experience of HIV-related stigma (OR=3.6, 95%CI: 1.06 – 12.08, p=0.040). In order of importance, major themes for factors perceived to facilitate poor HRQoL included; Stigma, treatment-related challenges, poverty, poor social support, family-related challenges and negative peer influence. Conclusion: The prevalence of poor health-related QoL among adolescents living with HIV in this study is low, but the odds of developing it is increased if the adolescent; resides in an urban setting, has no formal education, perceives it not easy to access ARVs and if he/she has perceived experience of HIV-related stigma. On the other hand, perceived facilitators of poor HRQoL among adolescents living with HIV majorly relate to poverty and lack of adequate social support systems in home and school environments. Recommendations: There is need for collective effort to improve social support systems especially in schools and to create more community-wide HIV awareness in order to reduce HIV-related stigma.