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New survey data show patients with post-COVID-19 condition symptoms lasting more than 4 weeks are struggling to find caregivers and treatments relevant to their needs.
Adult patients with post-COVID-19 condition (PCC), known commonly as “long COVID-19,” are more likely to experience difficulties with accessing and affording health care than those without, according to new findings.1
In new analysis of US survey data, patients whose SARS-CoV-2 infection progressed to PCC were more likely to report issues with unmet health care needs, finding an available clinician and receiving authorization for health plan care than patients who had COVID-19 without progressing to long-term burden.
The findings elucidate systemic struggles to respond to PCC, a condition that may affect up to 1 in 5 people infected with the pandemic virus that currently is without any regulated therapies nor consistently recommended treatment regimens for impacted patients.2
A research team led by Michael Karpman, MPP, of the Health Policy Center at the Urban Center in Washington DC, sought to examine health care access and affordability as it relates to PCC among adult patients in the US. Prior to their assessment of nationally-representative survey data from July 2022, there was no such known published research that delved into the association between long COVID-19 and challenges with care accessibility.
“The experiences of patients with similar and overlapping conditions, such as myalgic encephalomyelitis/chronic fatigue syndrome, suggest that US patients with PCC may experience difficulties navigating a fragmented health care system,” investigators wrote. “Potential barriers to care include difficulty finding available and accessible clinicians, lack of care coordination, clinician attitudes toward or lack of knowledge about the illness, denial of health insurance claims for tests and treatments, and high out-of-pocket costs.”
With consequences of unmet care needs including increased risk of disability and overall worsened quality of life, it’s critical for clinicians to interpret PCC patients’ access to timely and effective treatments.
Karpman and colleagues used data from the Health Reform Monitoring Survey, an online questionnaire that collected thousands of US adult contributions from June to July 2022. The team sought patients with self-reported long COVID-19—defined as experiencing unexplained symptoms ≥4 weeks after first being diagnosed with COVID-19—aged 18 – 64 years old. Their main outcomes included a patients’ access to usual place of care; their need to forgo care in the last 12 months due to costs, difficulty finding a clinician or difficulty with health insurance coverage; difficulties paying family medical bills in the last 12 months; and accumulated overdue medical debt.
The survey recruited 19,162 panel members, of whom 9599 completed it, and 9484 were included in the investigators’ final assessment. Mean respondent age was 41.0 years old; 50.6% were female and 58.9% were White. Approximately one-third (36.4%) of respondents had previously been diagnosed with COVID-19; among them, 22.5% reported having PCC symptoms for >4 weeks and 16.2% reported having such symptoms for >3 months.
As has been consistent with previous data,3 adults with PCC were more likely to be female (65.4%) or Hispanic (28.7%) than those with a COVID-19 diagnosis or those without ever being diagnosed.
Approximately two-thirds (62.9%) of adults with PCC reported a clinician had ever diagnosed with ≥1 of the surveyed physical health conditions. However, the same population were less likely to be insured in the last year than adults with a lone COVID-19 diagnosis or adults without either diagnosis.1
Adults with PCC were additionally more likely to report challenges in the last 12 months due to costs (27.0%), difficulties finding clinicians who accept new patients (16.4%), getting a timely appointment (22.0%) and getting health care plan authorization (16.6%) than adults with only a COVID-19 diagnosis or no diagnosis at all (P <.001).
Karpman and colleagues noted that though a majority of patients with long COVID-19 did report having a familiar source of health care, some may be troubled to find a clinician who is knowledgeable about their condition and its symptoms.
“In addition, some patients may not have been aware of or had access to a multidisciplinary PCC clinic,” investigators wrote. “Because PCC is an emerging chronic condition, many clinicians may be constrained by a lack of evidence on effective diagnostic tests and treatments, which may be associated with increased likelihood of referring patients to 1 or more specialists with limited availability.”
Indeed, long COVID-19 caregivers like Marc A. Sala, MD, co-director of the Northwestern Medicine Comprehensive COVID Center have previously told HCPLive that the evidence base for any potential PCC treatments is “probably dismal,” and that some currently adopted methods of care are supported by ““very unfounded biology” while he and colleagues work to define an optimal care team for these in-need patients.2
“What we found is that while most people need to see more than 1 specialist to deal with their symptoms, not everyone needs to see all the specialists,” Sala said. “When we look back at our data, we found that most people saw 2 more specialists, and they were rarely the same one.”
The investigators concluded that their survey analysis showed greater barriers to health care access and affordability for patients with self-reported PCC—challenges that may eventually result in worsening long-term health and reduced capability in the workforce and personal lives of untreated patients.1
“Policy makers may be able to expand access to care by accelerating research on PCC treatments, disseminating clinical care guidelines, and regulating insurance practices,” they wrote.