As the number of effective antiretroviral therapy (ART) options increases, there is greater opportunity to involve HIV patients in ART selection. To establish the parameters for a shared ART decision-making process, we sought to identify ART characteristics that are important to patients and understand considerations in ART selection from both patient and provider perspectives. Using a mixed-methods approach, 16 patients and 12 healthcare providers were interviewed, and ranking tasks were conducted with 26 patients to identify ART characteristics that are relevant for shared decision making. Interviews were coded using direct content analysis and complemented by a quantitative analysis of references to specific attributes. Ranking data were analyzed through count analysis. Qualitative analysis of patient interviews identified four major categories of ART characteristics that are pertinent to shared decision making: side effects (14/16 patients), administration characteristics (14/16 patients), dosing (13/16 patients), and long-term effects (12/16 patients). Other considerations included expectations for patient involvement in ART decision making, relationship with provider, and efficacy. The degree of concordance between patients and providers differed across categories. Ranking exercises demonstrated differences in the ways providers and patients prioritize specific side effects and food requirements. Expectations for patient involvement in the selection process also varied greatly among and between patients and providers. We identify specific attributes of ART that are decision-relevant to patients and providers, describe heterogeneity of their relative importance, and note variable perceptions of shared decision making. Individualizing ART will require greater investment in understanding an individual patient's preferences, including her/his desire to participate in shared decision making.
BackgroundAs antiretroviral therapy (ART) for HIV becomes increasingly available in low and middle income countries (LMICs), understanding reasons for lack of adherence is critical to stemming the tide of infections and improving health. Understanding the effect of psychosocial experiences and mental health symptomatology on ART adherence can help maximize the benefit of expanded ART programs by indicating types of services, which could be offered in combination with HIV care.MethodologyThe Coping with HIV/AIDS in Tanzania (CHAT) study is a longitudinal cohort study in the Kilimanjaro Region that included randomly selected HIV-infected (HIV+) participants from two local hospital-based HIV clinics and four free-standing voluntary HIV counselling and testing sites. Baseline data were collected in 2008 and 2009; this paper used data from 36 month follow-up interviews (N = 468). Regression analyses were used to predict factors associated with incomplete self-reported adherence to ART.ResultsIncomplete ART adherence was significantly more likely to be reported amongst participants who experienced a greater number of childhood traumatic events: sexual abuse prior to puberty and the death in childhood of an immediate family member not from suicide or homicide were significantly more likely in the non-adherent group and other negative childhood events trended toward being more likely. Those with incomplete adherence had higher depressive symptom severity and post-traumatic stress disorder (PTSD). In multivariable analyses, childhood trauma, depression, and financial sacrifice remained associated with incomplete adherence.DiscussionThis is the first study to examine the effect of childhood trauma, depression and PTSD on HIV medication adherence in a low income country facing a significant burden of HIV. Allocating spending on HIV/AIDS toward integrating mental health services with HIV care is essential to the creation of systems that enhance medication adherence and maximize the potential of expanded antiretroviral access to improve health and reduce new infections.
Objective: Limited data describe patient preferences for the growing number of antiretroviral therapies (ARTs). We quantified preferences for key characteristics of modern ART deemed relevant to shared decision making.Methods: A discrete choice experiment survey elicited preferences for ART characteristics, including dosing (frequency and number of pills), administration characteristics (pill size and meal requirement), most bothersome side effect (from diarrhea, sleep disturbance, headaches, dizziness/difficulty thinking, depression, or jaundice), and most bothersome long-term effect (from increased risk of heart attacks, bone fractures, renal dysfunction, hypercholesterolemia, or hyperglycemia). Between March and August 2017, the discrete choice experiment was fielded to 403 treatment-experienced persons living with human immunodeficiency virus (HIV), enrolled from 2 infectious diseases clinics in the southern United States and a national online panel. Participants completed 16 choice tasks, each comparing 3 treatment options. Preferences were analyzed using mixed and latent class logit models.Results: Most participants were male (68%) and older (interquartile range: 42-58 years), and had substantial treatment experience (interquartile range: 7-21 years). In mixed logit analyses, all attributes were associated with preferences. Side and long-term effects were most important, with evidence of substantial preference heterogeneity. Latent class analysis identified 5 preference classes. For classes 1 (40%), 2 (24%), and 3 (21%), side effects were most important, followed by long-term effects. For class 4 (10%), dosing was most important. Class 5 (4%) was largely indifferent to ART characteristics. Conclusion:Overall, treatment-experienced persons living with HIV valued minimizing side effects and long-term toxicities over dosing and administration characteristics. Preferences varied widely, highlighting the need to elicit individual patient preferences in models of shared antiretroviral decision making.
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