“I Know That I Was a Part of Making a Difference”: Participant Motivations for Joining a Cure-Directed HIV Trial with an Analytical Treatment Interruption

Neergaard, Rebecca; Jones, Nora L.; Roebuck, Christopher; Rendle, Katharine A.; Barbati, Zoe; Peterson, Beth; Tebas, Pablo; Mounzer, Karam; Metzger, David; Montaner, Luis J.; Dubé, Karine; Barg, Frances K.

doi:10.1089/aid.2022.0040

Cited by 9 publications

(8 citation statements)

References 28 publications

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“…In addition to the three barriers, we also distinguished four facilitators for PWHIV’s hypothetical WTP. The facilitator most often reported was altruism [ 23 , 27 – 32 , 34 , 39 , 42 , 43 , 45 – 52 , 55 , 58 – 61 ]. This included PWHIV’s desire to help others and contribute to scientific knowledge.…”

Section: Resultsmentioning

confidence: 99%

“…This included PWHIV’s desire to help others and contribute to scientific knowledge. The second facilitator focused on perceived personal benefits [ 23 , 28 – 30 , 32 , 34 , 35 , 39 , 41 – 43 , 46 – 52 , 55 , 56 , 58 , 60 , 61 ], including possible health and psychological improvements, possible stigma reduction, the acquisition of more knowledge about HIV cure (research), better access to care, and financial compensation. The third facilitator related to personal experiences and beliefs .…”

Section: Resultsmentioning

confidence: 99%

“…Generally, qualitative studies described the process by which PWHIV carefully vet information while considering and balancing the risks and benefits of participating in HIV cure research [ 55 , 67 ]. To aid PWHIV in the decision-making process, several studies suggested that PWHIV prioritized discussing participation in HIV cure research with healthcare providers and loved ones [ 44 , 45 , 47 , 55 , 61 , 67 ]. Most studies that evaluated decision-making processes in HIV cure research argued that participants required sufficient information to make reasonable decisions [ 45 , 47 , 55 , 58 , 59 ].…”

Section: Resultsmentioning

confidence: 99%

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The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

Noorman,

de Wit,

Marcos

et al. 2023

AIDS Behav

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As research into the development of an HIV cure gains prominence, assessing the perspectives of stakeholders becomes imperative. It empowers stakeholders to determine priorities and influence research processes. We conducted a systematic review of the empirical literature on stakeholder perspectives. PubMed, Embase, Web of Science, and Scopus were searched for empirical, peer-reviewed articles, published before September 2022. Our analysis of 78 papers showed that stakeholders could be divided into three categories: people with HIV, key populations, and professionals. Following thematic synthesis, two main themes were distinguished: stakeholders’ perspectives on HIV cure research and stakeholders’ perspectives on HIV cure. Research on perspectives on HIV cure research showed that stakeholders’ hypothetical willingness to participate (WTP) in HIV cure research was relatively high, while actual WTP was found to be lower. Studies also identified associated (individual) characteristics of hypothetical WTP, as well as facilitators and barriers to hypothetical participation. Additionally, we reported research on experiences of actual HIV cure research participation. Our analysis of stakeholder perceptions of HIV cure showed that most stakeholders preferred a cure that could eliminate HIV and outlined positive associated impacts. Furthermore, we observed that most included studies were conducted among PWHIV, and in the Global North. To empower stakeholders, we recommend that future research include an even greater diversity of stakeholders and incorporate theories of behavior to further explore how stakeholders decide to meaningfully engage in every stage of HIV cure research.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

Noorman,

de Wit,

Marcos

et al. 2023

AIDS Behav

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show abstract

“…Beyond statistical and clinical considerations, patient’s perception should be taken into account and recent studies have shown the good acceptability of ATI trials (12,13,30) as long as severe side effects are avoided (31). According to these studies, a part of the respondents would not accept any sustained period of viremia (35% in (32)).…”

Section: Discussionmentioning

confidence: 99%

“…While accepted in a context of clinical trials involving people living with HIV (PLWH) (12,13), treatment interruption should be carefully monitored and several recommendations have been proposed to limit potential risks, in terms of morbidity, mortality, disease progression, HIV transmission, emergence of new drug-resistance, development of neurological or cardiovascular disorders (14,15). These recommendations led to the development of clearly- defined interruptions: Analytical treatment interruptions (ATI) (14).…”

Section: Introductionmentioning

confidence: 99%

Definition of viroIogical endpoints improving the design of HIV cure strategies using analytical antiretroviral treatment interruption

Alexandre,

Prague,

Lhomme

et al. 2024

Preprint

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Background. Analytical treatment interruption (ATI) is the gold standard in HIV research to validate the ability of novel therapeutic strategies to long-term control viremia without antiretroviral treatment (ART). Viral setpoint is commonly used as endpoint to evaluate their efficacy. However, to mitigate higher viremia risk without ART, trials use short ATI phases and strict virological ART re-start criteria, compromising the observation of the setpoint. Methods. We analyzed viral dynamics in 235 HIV-infected participants from three trials, examining various virological criteria during ATI phases. Time-related (e.g. time to rebound, peak and setpoint) and VL magnitude-related criteria (peak, setpoint and time-averaged AUC [nAUC]) were described. Spearman correlations were analyzed to identify surrogate endpoints for setpoints. Additional correlation analyzes were performed to identify optimal virological ART re-start criteria mitigating the risks of ART interruption and the evaluation of viral control. Results. Comparison of virological criteria between trials showed strong dependencies on ATI design. Similar correlations were found across trials, with nAUC identified as the criterion most strongly correlated with the setpoint, with correlations higher than 0.70. A threshold of at least 100,000 copies/mL for two consecutive VL measurements is requested as virological ART re-start criteria to keep strong correlations between the setpoint and nAUC. Conclusions. Our results emphasize the benefits of an ATI phase longer than 12 weeks, with regular monitoring, and a VL threshold of 100,000 copies/mL as virological ART re-start criteria to limit the risk for patients while capturing enough information to keep nAUC as an optimal proxy for the setpoint.

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Evaluating the psychosocial experiences of participants in HIV cure research before, during, and after analytical treatment interruptions: a longitudinal qualitative study in the United States

Hill,

Garcia,

Nguyen

et al. 2024

Social Science & Medicine

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“I Know That I Was a Part of Making a Difference”: Participant Motivations for Joining a Cure-Directed HIV Trial with an Analytical Treatment Interruption

Cited by 9 publications

References 28 publications

The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

Definition of viroIogical endpoints improving the design of HIV cure strategies using analytical antiretroviral treatment interruption

Evaluating the psychosocial experiences of participants in HIV cure research before, during, and after analytical treatment interruptions: a longitudinal qualitative study in the United States

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