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Failing Fragmented HIV Care Continuum for Aging & Elderly PLWH & all PLWH
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Download the PDF here
Download the PDF here
the very need for this review is disappointing: 25 years after the first benefits of treatment as prevention were identified [4-6], about 61% of PLH are out-of-care [2], 70% are not virally suppressed [2], and 43% of new infections are transmitted by PLH who have dropped out-of-care [1]. These are dismal outcomes - especially when there are clear benefits to PLH who remain in care - a longer, high-quality, healthier life, as well as benefits to their sexual partners who do not become infected with HIV [4,5]. In addition, the CDC team's meta-analyses do not suggest intervention benefits on the magnitude of those needed to end the HIV epidemic.
Failing Care is a failure for young & old but the old are now increasingly shriveling into premature & acutely higher rates of frailty, fractures, unmanaged diabetes, heart disease & cognitive impairment. The older & aging PLWH are VERY VERY UPSET they cant get the care & attention they need !!!!! This is explosive - soon frailty & death rates will explode. And marginalized PLWH and women with HIV are bearing the biggest burden of this inequity and the rest of the privileged community does NOT care, its ignored, Its politics ! The yong adult & adolescent PLWH who were infected prenatally are also very much impacted by premature or accelerated aging & higher rates of comorbidities, which will as they age become a much more serious problem because they will be much younger in also having to deal with what elderly PLWH are suffering now. For the elderly frailty & increased mortality rates are real, but fr these younger PLWH w don't know yet the full impact yet and we aren't systematically addressing that either.
An estimated 87% were diagnosed. Approximately 66% had received HIV medical care. pproximately 50% were retained in care. An estimated 57% had achieved viral suppression.
https://www.hiv.gov/federal-response/policies-issues/hiv-aids-care-continuum
This is notable, as it points to the role played - at least in part - by the care fragmentation inherent in the US healthcare system. Without national indicators or thresholds for clinical outcomes, services are unlikely to reach scale.
"You can't expect retention in care until you have as close to [a] seamless, less fragmented safety net in the US," said Mary Jane Rotheram-Borus, PhD, distinguished professor of clinical psychology and director of the Global Center for Children and Families at the Semel Institute for Neuroscience and Human Behavior at the University of California-Los Angeles. (Rotheram-Borus authored an accompanying editorial but was not involved in the study.)
Strategies to improve HIV care outcomes for people with HIV who are out of care
It is estimated that 43% of the new HIV transmissions in the U.S. occurred from PWH aware of their status, but not in care [2]. Care engagement of PWH who are out of care (OOC) is critical for reaching and maintaining viral suppression and preventing HIV transmission. Re-engaging and retaining OOC PWH in HIV medical care are vital for viral suppression and preventing HIV transmission. Our findings indicate strategies such as patient navigation and provision of appointment help/alerts, psychosocial support, and transportation/appointment accompaniment may be effective for improving HIV care outcomes. Data-to-care is also effective for engaging OOC PWH back into care and retaining them in care, but for viral suppression, the evidence is less clear. The overall study quality of studies included in this review was moderate to weak, suggesting that more rigorous testing of interventions and better reporting are warranted. This systematic review and meta-analysis identified several effective strategies such as patient navigation, appointment/alert assistance, psychosocial support, transportation/appointment accompaniment, and data-tocare for improving HIV care outcomes for PWH who are OOC. The evidence for the effectiveness of data-to-care for viral suppression is uncertain, needing more rigorous evaluation.
The aim of this study was to evaluate the effectiveness of five intervention strategies: patient navigation, appointment help/alerts, psychosocial support, transportation/appointment accompaniment, and data-to-care on HIV care outcomes among persons with HIV (PWH) who are out of care (OOC). Design: A systematic review with meta-analysis. Methods: We searched CDC's Prevention Research Synthesis (PRS) Project's cumulative HIV database to identify intervention studies conducted in the U.S., published between 2000 and 2020 that included comparisons between groups or prepost, and reported at least one relevant outcome (i.e. re-engagement or retention in HIV care, and viral suppression). Effect sizes were meta-analyzed using random-effect models to assess intervention effectiveness. Results: Thirty-nine studies reporting on 42 unique interventions met the inclusion criteria. Overall, intervention strategies are effective in improving re-engagement in care [odds ratio (OR) = 1.79;95% confidence interval (95% CI): 1.36-2.36, k = 14], retention in care (OR = 2.01; 95% CI: 1.64-2.64, k = 22), and viral suppression (OR = 2.50;95% CI: 1.87-3.34, k = 27). Patient navigation, appointment help/alerts, psychosocial support, and transportation/appointment accompaniment improved all three HIV care outcomes. Data-to-care improved re-engagement and retention but had insufficient evidence for viral suppression. Conclusion: Several strategies are effective for improving HIV care outcomes among PWH who are OOC. More work is still needed for consistent definitions of OOC and HIV care outcomes, better reporting of intervention and cost data, and identifying how best to implement and scale-up effective strategies to engage and retain OOC PWH in care and reach the ending the HIV epidemic goals.
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Editorial Comments
Strategies to improve HIV care outcomes for people with HIV who are out of care: the need for well designed health systems
AIDS May 2022 - Mary Jane Rotheram-Borus, hD the founder of CHIPTS at UCLA, Center for HIV Identification, Prevention, and Treatment Services
The most recent meta-analyses of outcomes for persons with HIV (PLH) in the United States who are out-of-care [1]indicate both the progress made and the challenges that remain in designing and broadly implementing interventions for PLH. In contrast to two earlier review articles on this topic [2,3], this meta-analysis found significant benefits of five different HIV-related interventions: patient navigation, appointment alerts; transportation and appointment coordination; social support, and data-to-care (i.e. using a surveillance system to inform providers when a PLH has dropped out-of-care). Reengagement and retention in care and, sometimes, viral suppression, typically doubled when PLH received an intervention.
Yet, the very need for this review is disappointing: 25 years after the first benefits of treatment as prevention were identified [4-6], about 61% of PLH are out-of-care [2], 70% are not virally suppressed [2], and 43% of new infections are transmitted by PLH who have dropped out-of-care [1]. These are dismal outcomes - especially when there are clear benefits to PLH who remain in care - a longer, high-quality, healthier life, as well as benefits to their sexual partners who do not become infected with HIV [4,5]. In addition, the CDC team's meta-analyses do not suggest intervention benefits on the magnitude of those needed to end the HIV epidemic.
Perhaps more disturbing is that the types of interventions being mounted and evaluated have been successfully used for many decades in private enterprise [6] and in large health systems in other high-income countries (e.g. total quality management at the National Health Services in the UK [7]) as part of their basic operating principles. For example, if health systems and care providers do not realize a patient has dropped out-of-care, it is difficult to either recognize or solve a drop-out problem. If healthcare providers are not supportive in their communications, it is expected that patients may be alienated and less likely to return to care. Every hair salon and restaurant in the U.S. is likely to send an appointment reminder. Yet, such reminders in healthcare settings for PLH appear to be an innovative and novel intervention within HIV care settings. Even peer navigation emerges because of the huge fragmentation of the U.S. healthcare system [8] and may not be useful in less fragmented systems. The strategies being tested in the U.S. and those included in this meta-analysis are largely common-sense operating principles of good business.
It is comforting to recognize that many studies included in the meta-analyses utilized multiple strategies to improve PLHs' retention and reengagement in care. It is also a strength that the studies are focusing largely on structural interventions, the system that the patient is encountering is the target of almost all the interventions.
Systematically increasing positive social interactions, appointment reminders, transportation, and giving providers information on dropouts is not aimed at only modifying the patients' behaviors, but at also shifting overall quality and efficiency of healthcare system.
Thus, the range of interventions being evaluated could have been conducted regarding almost any chronic condition, not only those focused on HIV-related healthcare. Almost all are strategies demonstrated efficacious for health systems and advocated by policy makers for resilient health systems [9]. It is also regrettable that only two of the 42 studies in the meta-analyses were considered implemented with high-quality interventions. Given the relatively small number of randomized controlled trials (RCTs, N = 8) in this meta-analysis, the CDC team did a review of trials listed on www.clinicaltrials.gov to identify intervention RCT that had been funded, but not yet published. There were an additional 10 funded studies that finished data collection between 2016 and 2020 to have yet publish their results. In 2011, it was found that the average lag time between a key research finding being identified and its implications being implemented is 17 years [10].
It is unclear whether the failure to publish reflects negative study results, the slow editorial review process so common in science, or other systematic challenges researchers face. Regardless of the source, timely publication of study results is key for society to reap their investments in science. Nor is there yet evidence that some of the most novel resources newly available (e.g. in electronic medical records, on social media) are being broadly utilized to jump-start novel intervention research. These gaps in our research portfolios indicate the long way researchers still need to go to end the HIV epidemic. Addressing these challenges will reflect a step toward revitalizing the U.S. research biomedical enterprise, countering current public perceptions regarding our suboptimal research culture [11].
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