PH patients face care barriers from diagnosis to treatment
Doctors' knowledge gaps, insurance, transportation issues limit access
People with pulmonary hypertension (PH) face significant obstacles when seeking timely care, with barriers arising at each stage from symptom onset through diagnosis and treatment, according to interviews with patients and healthcare providers.
Those barriers included a lack of PH knowledge among non-specialists, symptoms being dismissed, and limited access to PH experts. Patients also struggled with inadequate insurance coverage for medications and difficulty traveling to PH centers.
The researchers said telementoring programs could help educate non-experts and build relationships between PH specialists and community providers. Leveraging technology and establishing satellite sites in remote locations could expand access to PH experts, they said.
“Comprehensive transformations to PH care delivery and health policies are needed to mitigate delays and improve quality of care for patients living with this disease,” the team wrote.
The interviews were detailed in the study, “Gaps in access to pulmonary hypertension care and opportunities for improvement: a multi-site qualitative study,” published in BMC Pulmonary Medicine.
Patients find delays despite guidelines recommending early referral
PH refers to elevated pressure in the arteries that carry blood through the lungs, which can lead to right heart failure and early death. Early recognition and treatment are key to improving outcomes for people with PH.
Despite current guidelines recommending early referral to specialists for patients with suspected PH and its subtypes, delays in PH diagnosis and treatment persist.
To explore patient and provider perspectives on access to PH care, a research team in the U.S. interviewed 21 PH patients and 20 providers at three expert PH centers. More than half (52%) of the patients were women, and nearly all (90%) were on PH treatment at the time they were interviewed. The providers included physicians, physician assistants, PH pharmacists, and PH nurses.
Patients and providers alike reported significant delays in diagnosis and referral to expert care after the onset of PH symptoms.
One physician noted “tremendous delays of care,” adding that patients “often have progressed disease” by the time they arrive at the PH expert center.
“A lot of patients get referred late in the course because community docs are not well versed in PH,” another physician said.
Patients said doctors’ attitudes sometimes delayed treatment. “I was having trouble breathing while exerting myself and the usual suspects of, ‘You’re obese,’ and ‘You’re deconditioned,’ came up,” one said.
The researchers recommended improving non-expert knowledge about PH, potentially via PH-specific telementoring programs. Enhancing relationships between non-specialist providers and PH centers through outreach programs may also help speed referrals, the team suggested.
New patients also encountered delays at PH care centers, the study found. Providers said a lack of preliminary testing before specialist referrals contributed to diagnostic delays. Institutional protocols could streamline the diagnostic assessment process, the researchers said.
“Simple education” would smooth the referral process, a provider said, adding that “everybody who you suspect for PH should have an echocardiogram, because that…will expedite everything immensely.”
Patients and providers reported significant delays in starting PH therapies after a diagnosis, primarily due to the cost of medications and inadequate insurance coverage. Although financial support programs can help offset drug costs, navigating the application process is often challenging, the patients said.
“Getting financial assistance has been extremely challenging…It took 63 phone calls between my insurance and the financial assistance people to finally get the [PH] meds in hand,” a patient noted.
Some oxygen companies offer home oxygen temporarily, “but then they charge the patient,” who can’t afford it, said a PH nurse.
The team proposed expanding insurance coverage of PH medications.
Patients also faced obstacles in maintaining access to care after diagnosis and treatment initiation. They cited geographic barriers, provider availability, and ongoing access to PH treatment. Patients with fewer economic resources faced more severe travel limitations.
“It’s difficult for [my patients] to get into [large city] very often because they…tend to be a lower socioeconomic demographic and transportation is very challenging…a lot of these patients don’t end up getting care quite often,” a physician said.
The research team said technology like telehealth and electronic health records could mitigate geographic barriers and maintain follow-up. PH specialists could also establish satellite care sites in more remote locations and collaborate with local providers, they said.
“Patients living with pulmonary hypertension experience significant barriers in receiving timely PH care across the entirety of their health journey,” the researchers wrote. “Multifaceted interventions on the provider, healthcare system, and health policy levels are needed to improve access to PH care along the PH care continuum and improve outcomes for patients with PH.”
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