Retention, mental health, and scalable treatment programs for youth living with HIV: An exploration of social and behavioral influences
Abstract
Background: Adolescents and young adults living with HIV (AYLHIV) are at higher risk of negative health outcomes including disengagement from care, viral non-suppression, depression, and anxiety. This additional risk may be partially explained by the substantial changes in relationship structures, cognitive functioning, and independent self-management of HIV that occur throughout adolescence, but age-specific data is scarce. Understanding the demographic, social, and behavioral correlates of poor AYLHIV outcomes can inform tailored prevention programs and identify AYLHIV who could most benefit from interventions. As we seek to scale up evidence-based interventions to support youth engagement in care, stakeholder perspectives and priorities are necessary to identify implementation strategies with the highest likelihood of success.
Methods: Chapters 1 and 2 of this dissertation used longitudinal survey data from the Data-informed Stepped Care study (DiSC; NCT05007717; MPIs: Drs. John-Stewart, Kohler, Agot). This cluster randomized clinical trial enrolled a cohort of 1,904 AYLHIV to evaluate the impact of a data-driven tool (the DiSC intervention) that tailored AYLHIV health services to youth needs. Chapter 1 aimed to identify demographic, social, behavioral, and care-related correlates of non-retention (missed visits and loss-to-follow-up [LTFU]) among AYLHIV while Chapter 2 assessed prevalence, longitudinal patterns, and correlates of depression and anxiety among AYLHIV using generalized mixed effects Poisson regressions. In Chapter 3, we conducted a workshop using the Nominal Group Technique (NGT) to guide a stakeholder workshop to prioritize implementation strategies to support scale-up and sustainability of the DiSC intervention.
Results: In Chapter 1, higher resilience and satisfaction with clinic were associated with lower risk of missed visits. Among males, satisfaction with clinic was associated with lower risk of missed visits while higher stigma was associated with increased risk. Among females, resilience was associated with lower risk. Having no living parents was associated with higher LTFU risk. In Chapter 2, prevalence of at least mild depressive and anxiety symptoms were 8.3% and 3.7% respectively, with significant declines over follow-up (p<0.001). Older age was associated with depression and anxiety. Previous experience of violence was associated with depression and anxiety across subgroups. Stigma was associated with higher prevalence of depression and anxiety, and associations varied by age and gender subgroup and stigma constructs. Personal experiences of stigma and perceived public stigma were most strongly associated with depression. Correlates of anxiety were similar to depression with differences in subgroups of age, gender, and mode of HIV acquisition. In Chapter 3, highly prioritized strategies included prioritization of AYLHIV with mental health and viral suppression challenges, improving provider training and resources, and continuous quality improvement meetings throughout stepped care scale-up. The majority of participants (82.5%) felt that appropriate strategies were identified. Workshop modifications (two-day format, implementation science education) were viewed particularly favorably in qualitative evaluations.
Conclusions: Older AYLHIV had the most retention and mental health challenges. Correlates of non-retention, depression, and anxiety vary substantially between strata of gender, age, and mode of HIV acquisition, highlighting the need for tailored strategies to address retention and mental health disorders among AYLHIV. Interventions targeting resilience-building, stigma reduction, and increasing satisfaction with care may be beneficial to improve outcomes for AYLHIV. Workshop stakeholders also identified a set of 10 implementation strategies that may improve uptake and use of the DiSC intervention among AYLHIV care and treatment implementers across Kenya. Future work is needed to evaluate strategy implementation and effectiveness and may consider incorporation of tailored interventions identified above.