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Recommendations for patient referral to a PH specialist

Consensus Statement
Issued by the Scientific Leadership Council

DISCLAIMER:
The information below is for general information only. These guidelines may not apply to your individual situation. You should rely on the information and instructions given specifically to you by your PH specialist and/or the nurses at your PH Center. This information is general in nature and may not apply to your specific situation. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

Pulmonary arterial hypertension (PAH) is a rare disease. Patients with suspected PAH should have their doctors perform diagnostic testing based on their suspicion for PAH. This will often include an echocardiogram to estimate how high their pulmonary artery pressure is. If the echocardiogram suggests PAH, or is confirmed by right heart catheterization, it is appropriate for the treating doctor to refer the patient to a doctor that regularly evaluates and treats PAH (PH specialist).

A PH specialist along with the entire PAH team has the most experience managing PAH and has expertise with PAH-specific drugs, such as calcium channel blockers (CCBs), prostacyclins, endothelin receptor antagonists and phosphodiesterase 5 inhibitors. The PAH team may also be participating in clinical research trials that offer new, alternative investigational PAH therapies. Because all of these therapies require expertise in PAH, it is recommended that only PH specialty treatment centers initiate these treatments.

The follow-up care of patients receiving PAH-specific therapies should include both visits to the patient's primary care physician and periodic evaluations by the PH specialist. The frequency of visits should be individualized according to the patient's specific clinical condition. It is also advisable to involve a local cardiologist or pulmonologist in the patient's care.

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.