Advancing Patient-Centered Care in PAH

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Dr. Ford:
This is CME on ReachMD. I'm Dr. Jimmy Ford. Today, I'd like to discuss the importance of a patient-centered approach in treating pulmonary arterial hypertension, or PAH. We as providers often focus on the disease and meeting specific treatment goals without considering that the disease occurs in the context of a multitude of different patients of all ages, each with different goals and priorities, and aspirations. The great physician Sir William Osler once said, “The good physician treats the disease; the great physician treats the patient who has the disease.”

To recognize the importance of this in PAH, the task force on patient perspectives was placed first in the order of presentations at the 7th World Symposium on Pulmonary Hypertension last summer in Barcelona. In this task force, it was brought to light that inclusion of the patient in all decisions regarding their care is of paramount importance. We providers focus on objective metrics such as the 6-minute walk distance, the BNP or proBNP, the hemodynamics, the echocardiogram data, the functional class, among others, and use these to assess risk scores and drive treatment decisions—with the goal of achieving a low-risk status.

However, not all patients’ situations are aligned with whatever therapies are needed to achieve low-risk status. In fact, some patients may not even have the goal of achieving low-risk status from a PAH standpoint, depending on their comorbidities. For example, a patient of very advanced age with other competing comorbidities may have the goal of living long enough to simply attend the important life event of a loved one, but maybe not to achieve Functional Class I or II status.

As such, the degree of aggressiveness of treatment a patient is willing to take may be different. In fact, prior surveys of PAH patients have revealed that the majority of patients would choose better quality of life over longer life expectancy when given a choice between the two. It is thus very important for providers and patients to take a shared decision-making approach. At a high level, this involves the provider educating the patient on treatment options and the benefits and risks and adverse effects of each, and the patient then communicating their treatment goals to the provider in light of this information.

Integral to fostering success with this approach is the way in which multidisciplinary pulmonary hypertension care team centers are structured and managed, as well as the level of patient support and education available.

Furthermore, it's important to recognize the potential for holistic care aimed at both the patient and the caregiver, beyond the core medical treatment of the pulmonary hypertension disease itself. This care should ideally include the physical, psychological, social, spiritual, and financial support domains from the start of the patient’s engagement with their multidisciplinary team.

This is when PROMs—patient-reported outcome measures—which are discussed in other videos in this series, and the patient's own goals and priorities for rehabilitation of their health, can be used to help the multidisciplinary team understand and prioritize appropriate supportive care interventions jointly with the patient.

The key takeaway here is that patients need to be empowered with education about their PAH disease, as well as its treatments, so that providers can work with them to provide pharmacologic and nonpharmacologic supportive care that meets their goals. 

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