Brief Report: It's Time to Embed Health-Related Quality of Life Across all Steps of the HIV Care Cascade
Bibliographic record
Abstract
BACKGROUND: Calls for stakeholders across the global HIV landscape to widely and systematically adopt person-centered care and patient-oriented research approaches have been made by HIV scholars, clinicians, patients, and groups such as the Joint United Nations Programme on HIV/AIDS (UNAIDS). Such calls implicitly acknowledge that the end goal of HIV care, research, and advocacy goes beyond HIV viral suppression or undetectability toward ensuring optimal health-related quality of life (HrQoL) for people living with HIV (PLWH). Indeed, global efforts have focused on keeping people alive yet have failed to ensure that they feel alive. APPROACH: In this brief report, we highlight the progress that has been made toward evolving the HIV care cascade to better represent actual experiences of PLWH, especially those that are most vulnerable and marginalized. We then describe what person-centered care, patient-oriented research, and HrQoL are and why they are important for our current context in HIV. We conclude by sharing 2 propositions for the global HIV community to consider moving forward. CONCLUSIONS: HIV care must not only focus on viral suppression but also better recognize the intersecting and multifaceted challenges faced by PLWH when taking HIV treatment and engaging in care. Evaluating HrQoL at each step of the cascade using validated patient-reported outcome and experience measures would assist in systematically tracking and addressing challenges faced by PLWH. Measures chosen through global consensus may facilitate rigorous comparisons across jurisdictions. Adopting a patient-oriented research paradigm will also be crucial for empowering and meaningfully engaging patients throughout the research process.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.004 | 0.022 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.005 | 0.009 |
| Insufficient payload (model declined to judge) | 0.030 | 0.010 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".