A Mixed Methods Approach to Understanding Antiretroviral Treatment Preferences: What Do Patients Really Want?

Abstract

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.

Heterogeneous Patient Preferences for Modern Antiretroviral Therapy: Results of a Discrete Choice Experiment

“…effects, and plausible increases in the risks of long-term complications. 27 When asked, "Who would you prefer to make the decisions about which HIV medication you will take?" 79% of patients from the clinic-based cohorts preferred shared responsibility between doctors and patients (Table 2).…”

“…The selection of attributes was guided by previously published results of in-depth interviews and ranking exercises with HIV clinic providers and patients. 27 The objective of the DCE was to present survey respondents with hypothetical ART regimens, built on the characteristics of regimens actually available at the time of the survey. We measured preferences over the full range of potential attributes and attribute levels (values taken on by a given attribute) by presenting respondents with systematically designed ART options and observing their stated preferences.…”

“…As a first step toward the development and implementation of new shared antiretroviral decision-making models, we sought to quantify patients' preferences for key characteristics of modern ART using a DCE. The characteristics evaluated in this study were identified using extensive qualitative work 27 and describe features of regimens considered particularly relevant to patient participation in shared antiretroviral decision making. An innovative approach to the design of the DCE allowed for the consideration of a broad range of potentially preference-relevant side and long-term effects, while ensuring relevance to each individual participant.…”

Assessing the Content Validity of a New Patient-Reported Measure of Barriers to Antiretroviral Therapy Adherence for Electronic Administration in Routine HIV Care: Proposal for a Web-Based Delphi Study

“…The panel will contain 2 broad stakeholder groups, HIV patients and providers, acknowledging potential differences in opinion [28]. The perspectives of HIV patients and providers can diverge on critical aspects of HIV care [1,29], on the preferred attributes of ART [30] and on whether adherence problems are present [8]. What factors are reported to contribute to the success or failure of electronic health interventions are also found to differ between patients (eg, patient empowerment and self-management) and providers (eg, health care quality and workflow) [31].…”

Immediate Antiretroviral Therapy: The Need for a Health Equity Approach

“…Shared decision making may be an important area of exploration in the context of iART, given that patients living with HIV from vulnerable populations often expect that they will not have a say in their treatment plan and alternatively feel empowered when they do [ 48 , 54 ]. True shared decision making creates the space and possible framework for the exploration of stigma, alternative medical beliefs, structural racism, medical mistrust, health literacy, and a myriad of person-centric priorities rather than physician-centric priorities.…”