“The writing is on the wall” that virtual care does not meet the needs of people living with HIV who struggled with virus suppression prior to the COVID-19 pandemic, said Jason Farley, PhD, ANP-BC, AACRN, Associate Professor of Nursing at Johns Hopkins University, Baltimore, Maryland. It is time, therefore, for HIV care teams, particularly Ryan White HIV / AIDS Program clinics, to get creative to provide full service to patients.
This may mean redistributing the workforce so that one person acts as a community health worker. Or it could mean text and video calls are increasing. Helping patients find online support groups to address problems with alcohol or drug use; and conduct an overall assessment of patient needs over the course of the pandemic.
“The virtual patient-centered medical home may be the new normal post COVID-19 and we need to think about how we can use this model on patients for whom it works, but complement this model on patients who do not” Farley said at the 2020 annual virtual meeting of the Association of Nurses in AIDS Care (ANAC). This work “is essential to our ability to achieve the best possible patient outcomes.”
Early dates, tiered interventions
Farley referred to an article published in the Journal in September Aids This confirmed unpublished data mentioned at the 2020 International AIDS Conference. The article reported that virus suppression rates in people with HIV who attended the Ward 86 HIV clinic in San Francisco were down 31% from pre-COVID levels.
Of the 1,766 people who attended the clinic, about 1 in 5 had a detectable HIV viral load at any point in 2019. However, that rate was 31% higher after protection orders were issued. And although patients attended telemedicine visits more or less the same before and after the pandemic (31% versus 30% no-shows), virus suppression rates fell. The effects were particularly acute for the homeless.
“This destabilization occurred despite our population attending telemedicine visits more often than expected, as the volume of visits for outpatient treatments decreased by 60% across the country,” said her article. “Telemedicine visits, while greater patient comfort, can result in reduced access to the clinic-based social support services that are essential to suppressing viruses in vulnerable groups.”
That is the challenge HIV clinics are facing now, Farley said at the ANAC meeting.
He suggested a nuanced approach to nursing that had four levels of nursing, starting with the standard range, which could include email, electronic health records, and robo-calling to remind people of their appointments and replenish their medication. Individuals with persistent viral suppression may only need 90 days of auto-replenishing their medication. Individuals prone to non-compliance may need to be contacted by the clinic weekly or more frequently. Such contact could be made by a social worker, a community health worker, or through some form of virtual assistance.
Stage 4 patients with labile virus suppression require far more. This is the 15% of HIV patients who struggled with virus suppression prior to the pandemic. They are the patients Farley’s team focuses on at the John G. Bartlett Specialized Hospital for Infectious Diseases in Baltimore.
“We have completely deconstructed the patient-centered medical home,” he said of the early transition to virtual care. He suggested that clinicians evaluate their performance and ask themselves a few questions:
- Has anyone on the team reached out to each patient and checked in to find out what medical needs they have during the pandemic, whether medical or not? Did you rate the patient’s ability to receive video calls or text messages?
- How have group support programs addressing stigma or the social determinants of health fared in the transition to virtual medicine?
- Are patients in recovery being supported so they can participate in recovery programs online?
- How well have counseling services performed in engaging people in virtual care? Given the overall increase in mental health problems during the pandemic, it is currently expected that the use of psychosocial counseling will increase. “If they stagnate or go under, someone in the clinic has to think about this problem in-house,” he said.
- Are patients contacted about the effects of isolation on their lives? “The things that would normally allow us to mitigate and manage these conditions ourselves, like going to the gym, meeting up with friends, church services – all of these are being cut,” he said.
- Is there an early warning from a personal pharmacy to contact a community health worker with patients who haven’t picked up their medication in a week or more?
Farley referred to a 2015 model for an improved e-health approach to chronic care management that required e-support from the community and was enhanced through virtual communities.
These are some of the approaches Farley has taken in his clinic. He leads a team specifically focused on patients struggling with engagement prior to the pandemic. With a grant from the US Department of Health (Health Resources and Services Administration), the team – even before the pandemic – funded community health workers who have multiple contacts with patients online and virtually and can offer whatever it names. “Unapologetically enables” support for patients so they can focus on their health.
He gave the following example. Prior to the pandemic, a community health worker had worked on the team with a patient who showed up at each scheduled visit and swore she was taking her medication when she clearly was not. A community health worker made available through the scholarship saw that the patient’s greatest challenge in her life was caring for children for their children with special needs. The community health workers worked with the patient for months to find stable childcare for the child, paid 2 months rent for the patient to keep her from becoming homeless, and helped her find temporary accommodation. By the time the pandemic broke out, community health workers were already texting and video calling the patient regularly.
For the past 9 months, this patient had an undetectable viral load, Farley said.
“Nine months in a pandemic,” Farley repeated, “and the community health workers keep working with her and meeting her over and over again.”
Stigma on stigma
The need for that clinic support could be even more important for people living with HIV who acquire COVID-19, said Dr. Orlando Harris, Assistant Professor of Community Health Systems at the University of California’s School of California at San Francisco (UCSF) Nursing. HIV-related stigma is a well-known deterrent against people living with the virus. During the presentation, Harris asked Farley about the impact of the COVID-19 stigma on people living with HIV and COVID-19.
Farley said patients at his clinic told him they “ostracized” friends who tested positive for COVID-19. Harris recalled a person with HIV who took part in one of his studies and told researchers that despite taking all precautions – wearing a mask, staying socially aloof – he had still acquired COVID-19. There was nothing he could have done, Harris said, other than just not going to the grocery store.
Fear of developing another illness that is stigmatized, as well as the need to disclose it, can spark memories of the trauma of being diagnosed with HIV, Harris said. And with patient-centered medical households struggling to restore all-round services via telemedicine, he wonders whether clinicians should do more.
“I worry that people who survived an HIV diagnosis in the 80s and 90s before antiretroviral therapy emerged,” he said Medscape Medical News. “I worry that the people who survived a pandemic [may] Feeling anxious or living in fear that this new pandemic will turn them off. So I stress the need that we, as clinicians and also as researchers, really need to consider the support systems, coping mechanisms, counseling, or whatever you may need to support people living with HIV who are prone to COVID-19. ”
In telemedicine visits, this can be accomplished simply by asking people how they are Really do and what their coping mechanisms are.
Clinicians in San Francisco’s Ward 86 are not trying to provide this telemedicine support at the same level as it was when the pandemic began, according to Matthew Spinelli, MD, assistant professor of medicine and Monica Gandhi, MD, assistant director of HIV, Infectious Diseases, and others global medicine, who are both at UCSF and co-authors of the study.
They still offer telemedicine appointments to patients who request them, Spinelli said. He said about a third of his patients still prefer receiving their care virtually. The rest have returned for personal support.
“The analysis led us to open up care for our patients as soon as possible, with the idea that telehealth will not limit it to vulnerable HIV patients,” said Gandhi Medscape Medical News by email. “We don’t believe that it is right for a population that depends on the social support of the clinic.”
Association of Nurses in AIDS Care (ANAC) 2020 Annual Meeting: COVID-19 in People with HIV. Presented on November 11, 2020.
Heather Boerner is a scientific and medical reporter based in Pittsburgh, Pennsylvania.
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