PH and PAH: Where and From Whom Are Patients Receiving Care

Perspectives on where patients are receiving care for PH or PAH, as well as which specialists are involved.


Hilary M. DuBrock, MD: There’s significant geographic and center-to-center variability around which a specialist—a pulmonologist or a cardiologist—would be more likely to make an initial diagnosis of pulmonary arterial hypertension [PAH]. In some centers, PH [pulmonary hypertension] is managed by cardiologists; in other centers, PH is primarily managed by specialists in pulmonary medicine. Some centers also have a mixed approach with both pulmonologists and cardiologists managing patients with pulmonary arterial hypertension and making that initial diagnosis.

The initial diagnosis tends to be made mostly by providers who have expertise in pulmonary hypertension and are either cardiology or pulmonology trained. Rheumatologists play an important role in screening for pulmonary arterial hypertension in patients with high-risk conditions such as scleroderma, and will often first detect signs or symptoms of pulmonary hypertension but then refer their patients with connective tissue disease—associated pulmonary arterial hypertension to specialists in pulmonary hypertension for right heart catheterization, definitive diagnosis, and treatment.

Derek van Amerongen, MD, MS, FACOG: There are a number of specialists who treat PAH and PH: cardiologists, rheumatologists, pulmonologists. Certainly, we see intensivists inside the hospital, as well as other physicians who have particular specialties. I think the real question is who the best clinician is, or what the best care team is, to treat a given clinical situation or patient. That’s ultimately going to be the responsibility of the health system or of the provider organization. Certainly, 1 of the rate-limiting steps in terms of access to specialty care is the fact that at last count, there were only 52 PAH-approved centers in the United States. When you talk about patients who live in underserved areas, especially rural areas, access is going to be very problematic.

One of the things we’ve done traditionally is not require that there be a specific specialist who orders a drug because in many scenarios—and PH is certainly 1 of them—patients may go to the academic or tertiary care center, get their treatment plan developed by the specialists, and then return to their community, where the day-to-day management is done by an internist or even a family physician.

Ultimately, what we’re really talking about is how we maximize care coordination between the specialists and the other health care professionals, which may include not only physicians but also PAs [physician assistants] and nurse practitioners. How do we make sure that patients, regardless of where they live—whether it’s in an urban area or an underserved—are still going to have the optimal access to care. That continues to be 1 of the major challenges we have in the United States. Care coordination is really part of that solution.

The referral process to see specialists is going to depend primarily on the clinician who is making the diagnosis and managing the patient at the time. As we all know, 1 of the challenges with PH and PAH is a delay in diagnosis. It’s sometimes difficult for a patient to finally arrive at that diagnosis in a timely way because this is an uncommon condition and many clinicians are not attuned to it. Once that diagnosis is made, 1 of the responsibilities the plan takes on is to help facilitate access to a specialized center, whether it’s a PAH treatment center, tertiary care, or an academic center: wherever is going to be appropriate and most available to the member. The referral process is something we have streamlined tremendously over the years, and the biggest challenges are logistical. How does a patient get from point A to point B? How do we make sure we’re maximizing efficiency in getting them where they need to be?

At this point in time, we see most patients with PAH and PH receiving the bulk of their care from specialists. I think part of that is the fact that PAH and PH tend to be underdiagnosed. There are many more patients out there who have these conditions, and they’re simply not recognized and are not sent to the centers where they should be sent. As we see more conglomeration of the health care system into larger health systems across the country, that obviously has pluses and minuses.

Certainly, 1 of the benefits is improving the coordination and the communication between specialists and physicians in the community, whether they are local pulmonologists, internists, or primary care physicians. As we continue to have issues over the next few decades with manpower in health care, we’re probably going to see an interesting shift from all these patients seeing specialists exclusively to the specialists becoming more a part of a larger health care delivery team. This will mostly include health care professionals in the community, primary care physicians, and other physician extenders who will make sure we can maximize access for patients to this care regardless of whether they are in an immediate catchment area of a PAH treatment center.

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