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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.

Patients with suspected pulmonary hypertension should have their doctors perform diagnostic testing based on their suspicion for PH or PAH. This will often include an echocardiogram to estimate how high their pulmonary artery pressure is. If the echocardiogram suggests PH, 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 PH.

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

The follow-up care of patients receiving PH-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 may also be advisable to involve a local cardiologist or pulmonologist in the patient's care.

 


Collaborative Care

Due to the complexity of treating this life-threatening disease, the care of patients with PH should be nothing short of a collaborative team effort between the patients’ primary care physician and a PH specialty center.

Faces of PH

Marcia Beverly
Marcia Beverly

"After 15 months of many doctor visits, including a cardiologist and pulmonologist and many, many tests showing nothing amiss, and being diagnosed with asthma, I learned that I had quite a serious disease. I was in left heart failure by then, with several side effects and had pulmonary hypertension."
Read full story 

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.