Reporting Individual-Level Research Results from Neurocognitive and Psychological Research in People Living with HIV: Lessons from Dementia Research.

IF 3.7 2区医学 Q2 INFECTIOUS DISEASES Current HIV/AIDS Reports Pub Date : 2023-06-01 DOI:10.1007/s11904-023-00650-4

Holly L Peay, Stuart Rennie, Gail E Henderson

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Abstract

Purpose of review: There are growing expectations for the return of individual-level research results (RoR), which promotes autonomy and potential clinical and personal benefits. There are ethical and practical challenges, however, that may be exacerbated in research that assesses neurocognitive and psychological outcomes, including HIV-associated neurocognitive disorder (HAND). This paper reviews central concepts for RoR and recent empirical and conceptual articles from Alzheimer's disorder (AD) as a model for HIV.

Recent findings: Data from AD studies indicate high participant interest and low risk of harm from RoR, though additional research is needed. Investigators report a range of benefits, potential risks, and feasibility concerns. Standardized, evidence-based approaches are needed for RoR. For HIV research, we recommend a default position of offering RoR for cognitive and psychological outcomes. Investigators should justify decisions not to return results after assessing the potential value and feasibility of RoR. Longitudinal research is needed for feasible and evidence-based best practices.

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报告艾滋病毒感染者神经认知和心理研究的个体水平研究结果:来自痴呆症研究的经验教训。

综述目的:人们对个体水平研究结果(RoR)的回报期望越来越高，这促进了自主性和潜在的临床和个人利益。然而，在评估神经认知和心理结果的研究中，包括艾滋病毒相关的神经认知障碍(HAND)，可能会加剧伦理和实践方面的挑战。本文回顾了RoR的核心概念以及最近阿尔茨海默病(AD)作为HIV模型的经验和概念性文章。最近的发现:来自AD研究的数据表明，参与者的兴趣高，RoR的危害风险低，尽管还需要进一步的研究。研究者报告了一系列的益处、潜在风险和可行性问题。RoR需要标准化的、基于证据的方法。对于艾滋病毒研究，我们建议默认为认知和心理结果提供RoR。在评估RoR的潜在价值和可行性后，研究者应该为不返回结果的决定辩护。需要进行纵向研究以确定可行的、以证据为基础的最佳做法。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Current HIV/AIDS Reports INFECTIOUS DISEASES-

CiteScore

8.10

自引率

2.20%

发文量

期刊介绍： This journal intends to provide clear, insightful, balanced contributions by international experts that review the most important, recently published clinical findings related to the diagnosis, treatment, management, and prevention of HIV/AIDS. We accomplish this aim by appointing international authorities to serve as Section Editors in key subject areas, such as antiretroviral therapies, behavioral aspects of management, and metabolic complications and comorbidity. Section Editors, in turn, select topics for which leading experts contribute comprehensive review articles that emphasize new developments and recently published papers of major importance, highlighted by annotated reference lists. An international Editorial Board reviews the annual table of contents, suggests articles of special interest to their country/region, and ensures that topics are current and include emerging research. Commentaries from well-known figures in the field are also provided.