Referral to a specialized chronic thromboembolic pulmonary hypertension (CTEPH) center for follow-up treatment after a pulmonary embolism (PE) — a blood clot that blocks an artery in the lungs — is more likely if patients live closer to the center and have access to a primary healthcare provider, a U.S. study found.
Patients not referred generally were older and had a higher rate of coexisting disorders. But neither sex, race, ethnicity, nor household income appeared to have an effect on whether or not patients were referred to CTEPH centers for further treatment.
According to researchers, such care is needed for individuals who may experience ongoing problems resulting from pulmonary embolisms.
“Clinician education about CTEPH is important to ensure optimal care to patients with or at risk for chronic complications of acute PE,” the team wrote.
The study, “Differences in referral to a chronic thromboembolic pulmonary hypertension center following acute pulmonary embolism: a locoregional experience,” was published in the Journal of Thrombosis and Thrombolysis.
Investigating access to follow-up treatment for CTEPH patients after an embolism
CTEPH is a form of pulmonary hypertension that develops from acute PE, a blockage of an artery caused by blood clots, oftentimes starting in the legs, that become stuck in the lungs.
The condition occurs in up to 6.2% of acute PE patients, often within the first two years after an embolism. According to current guidelines, the disease should be considered in people with continued shortness of breath and functional limitations after three months of anticoagulation therapy — treatment to help prevent blood clots — following a PE.
The disease is curable with a timely referral for surgery. In fact, early surgical referral or treatment with specific pulmonary vasodilators or blood vessel wideners have been suggested to result in better outcomes.
To identify the factors that might impact patient referrals to specialized centers, researchers retrospectively analyzed data from 2,454 adults with acute PE. All had been diagnosed between 2018 and 2021 at a single academic center.
The proportion of patients referred to the CTEPH center was 4.9% (120 individuals). These patients were significantly more likely to have known risk factors for CTEPH, including rare blood cancers (10% vs. 4%) and bone infection (8% vs. 3%). Antiphospholipid syndrome, which occurs when the immune system mistakenly produces antibodies that increase the risk of blood clots, also was more likely in these patients (3% vs. 1%).
Compared with patients admitted to the referral center, those who were not referred were older (61 vs. 54 years) and more likely to have private insurance (43% vs. 40%) or Medicare (42% vs. 31%). These individuals also had a lower body mass index, which is a ratio of weight to height (28 vs. 28 kg/m2), and a higher rate of co-existing cancer (28% vs. 10%).
They also were less likely to be admitted to inpatient care at the time of PE diagnosis (47% vs. 74%) and to have a primary care provider (76% vs. 88%).
In addition, they lived further away from the referral center (9.1 miles vs. 6.7 miles) than the group referred to the CTEPH center.
“This finding [suggests] patients may have difficulties reaching referral centers or there is an inadequate awareness of specialty center services amongst providers practicing further from the center,” the researchers wrote.
“Direct inpatient attention and/or outpatient follow-up in the healthcare system improve access to specialized care,” they added.
There were no significant differences regarding sex, race, ethnicity, and median household income between the two groups.
Of 175 patients identified as at risk for CTEPH, 12% were referred for evaluation, with the distance to the CTEPH center significantly contributing to the distinction of who had been referred — 5.7 miles among those referred vs. 8.8 miles for patients not referred.
In addition, for patients at risk, the ones not referred to the CTEPH center were older (59 vs. 52 years), had a lower BMI (27 vs. 32 kg/m2), a higher rate of co-existing cancer (38% vs. 10%), and were less likely to be admitted at acute PE diagnosis (55% vs. 81%). However, these differences did not reach statistical significance.
Considering the links between cancer and venous thromboembolic disease, or blood clots in the veins, “interventions for CTEPH could significantly reduce the morbidity and mortality of patients with cancer,” the researchers wrote.
“With the creation of a comprehensive CTEPH center offering lifesaving interventions for this disease, it is incumbent on CTEPH clinicians to provide educational outreach to both patients and physicians and address any and all barriers to access to ensure equitable care,” the team concluded.
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