Drug access issues, COVID-related distress linked to rheumatic disease activity, flares
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Treatment access issues and distress related to COVID-19 are highly associated with disease activity and flare among patients with rheumatic disease, according to data published in Arthritis Care & Research.
In addition, the researchers found that both flares and medication disruptions were common among rheumatology patients in the Bronx during the month following the pandemic’s initial peak in New York.
“The first major peak in the pandemic in the U.S. occurred in New York City (NYC) in mid-April,” Dalynah Maldonado, MS, of the Albert Einstein College of Medicine, in the Bronx, and colleagues wrote. “In addition to the stress of being high risk for infection, people with rheumatologic conditions have been subjected to the stress of medication shortages while medications used to treat rheumatologic diseases, such as hydroxychloroquine, were being used for COVID-19.”
“Some individuals may be especially vulnerable to the challenges brought upon by the pandemic, including those with low-income and from racial and ethnic minorities,” they added. “The Bronx, which has the highest density of cases per capita in NYC, has been the most affected borough, with greater than 45,000 cases by June. Demographically, the Bronx is more than 90% Black or Hispanic/Latinx, populations disproportionately affected by COVID-19 in NYC. Data are lacking on those most vulnerable to the pandemic’s impact on resources, stress, and health.”
To analyze treatment disruptions and distress related to COVID-19 shortly after the pandemic’s peak in the Bronx, as well as examine whether factors related to the pandemic were associated with disease activity or flare, Maldonado and colleagues surveyed adult patients — and the parents of pediatric patients — from rheumatology clinics throughout the borough. All clinics were affiliated with Montefiore Medical Center (MMC).
Inclusion criteria were the presence of two ICD-10 billing diagnosis codes related to rheumatologic diseases, two visits within 6 months of each other to an adult or pediatric rheumatology clinic at MMC between March 1, 2018, and March 1, 2020, and a prescription for an immunomodulator within 180 days from the most recent rheumatology visit. Additional prospective participants were recruited from the Einstein Lupus Cohort Registry, a large cohort of more than 500 patients with systemic lupus erythematosus, as well as dermatomyositis and polymyositis registries at MMC clinics.
Recruitment was completed through telephone and email, using English and native Spanish speakers, with the surveys conducted between May 8 and June 1, also in English and Spanish. Among the 1,692 patients and parents contacted, 361 responded. The survey required 10 to 15 minutes to complete online and 20 to 30 minutes over the phone. Question topics included medication access, treatment interruptions, COVID‐19 infection, COVID‐19 hospitalization, and COVID‐related distress.
Among the respondents, 49% here Hispanic and 26% were non-Hispanic Black. The most common rheumatic diagnosis was systemic lupus erythematosus, at 64%. More than 90% of respondents were from the Bronx.
According to the researchers, 16% of participants reported difficulties in accessing medication. In addition, 14% reported treatment interruptions, and 41% reported experiencing flares. Using a multivariable logistic regression model, the researchers found that difficulty with medication access (OR = 4; 95% CI, 1.5‐10.4) and high COVID‐related distress (OR = 2.4; 95% CI, 1.2‐4.6) were associated with increased odds for flare.
In multivariable linear regression models, treatment access difficulty and high distress were also associated with worse disease activity scores, while high distress was associated with worse health scores.
“We documented a link between both medication access difficulty and COVID-related distress with disease control in rheumatology patients,” Maldonado and colleagues wrote. “Medication access to vulnerable patients during the pandemic should be an advocacy priority in the rheumatology community.”
“Future longitudinal studies are needed to understand the long-term impact of challenges related to the COVID-19 pandemic on Bronx rheumatology patients and will aid us in developing strategies to mitigate the adverse effects of the pandemic,” they added. “Examining the long-term effects of psychological distress related to COVID-19 on disease outcomes will help us better understand the role that psychological stress may play in rheumatologic diseases, in general.”
Perspective
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One of the most difficult things to tell a patient is “I don’t know”. As medical professionals, our patients look to us for answers and reassurance. This past spring, with the onset of the pandemic, there were more unknowns than knowns. We had to counsel our patients on medication adherence, possible interruption of treatment, access difficulties, potential shortages and a myriad of other issues that we didn’t anticipate and often we simply did not have all the answers. This uncertainty led to stress on many our patients, and we know that stress plays a role in the onset of flares in rheumatologic diseases.
Although the survey conducted by Maldonado and colleagues included only a small number of patient respondents, I think the data collected can be extrapolated to rheumatology practices all over the U.S. This survey, unlike other national surveys, also provided insight into a patient population that is often not well represented. I think this highlights the need to continue to advocate for all patients, but especially those with known deficits in access to care.
Perspective
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David A. McLain, MD, MACR, FACP, FRCP
The COVID-19 pandemic has been stressful on many aspects of life in the U.S. and the world, and rheumatology patients have been stressed as well. Many patients started the pandemic with telemedicine. Infusions were delayed or avoided because of COVID. Those missing their infusions had flares, as documented in this study.
Even patients on injectables and DMARDs missed their medications due to fear of COVID. However, corticosteroids used to treat flares was probably more dangerous than the targeted synthetic DMARDs, biologic DMARDs and conventional synthetic DMARDs that the patients avoided. Rheumatologists have an opportunity to register their patients who have had COVID-19 into a database, which will be helpful in analyzing the various combinations of medications our patients are receiving, as well as their outcome with COVID. The website is: https://rheum-covid.org/provider-registry-gate/.
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