Clinical Trials
How to choose a pulmonary HTN doctor
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Pulmonary Hypertension (PAH) is a relatively rare disease that was only treated in major medical centers before about 2001. At that time the only therapies available (that worked anyway) were delivered via continuous intravenous infusion. Few patients were diagnosed then and normally only the most severely sick of patients wound up referred for therapy.
Now more doctors and patients are aware the disease exists and many more patients are found who are suspected of having PAH and major medical centers no longer have the capacity to screen and treat all of these newly suspected PAH patients.
One common problem is that over 66% of patients suspected of having PAH really have other conditions such as left heart disease (particularly a condition called Left Ventricular Diastolic Dysfunction) that can mimic PAH but that are actually worsened if treated with PAH medications.
Doctors who finished their training before about 2000 will have had little or no useful training in diagnosing or treating PAH and to keep up must have obtained most if not all of their training and experience in PAH diagnosis and treatment after completing their formal residency and fellowship programs.
PAH is a hot area of research and in the last 10 years or so we’ve gone from a single FDA approved therapy to now having 10 approved therapies with many more in various stages of development. Unfortunately, most pulmonary and cardiology doctors have been far too busy to develop the knowledge and skills required to properly screen and treat patients with this still relatively rare disease.
What is a patient to do? There are some sources that can help. One is the Pulmonary Hypertension Association
http://phaassociation.org
They have lots of information for patients, caregivers, and physicians about PAH and they also have a searchable doctor directory where you can find a doctor who has an interest in and experience in diagnosing and treating PAH. Many doctors also post information about their practices so you can get a feel for the volume and complexity of patients they treat.
Find a Doctor who treats PAH
If you find a doctor in your area you’d like to consider seeing you will want to ask a few questions to help evaluate their capabilities:
1. How long have you been involved in treating PAH patents?
experience is good
2. How many patients do you have on PAH specific therapy?
doctors treating fewer than 5 or 10 patients are probably dabblers and not really committed to this specialty area
3. How many patients have you treated with PAH specific oral agents, inhaled agents, and parenteral agents?
you want a doctor who can use any or at least most of the available agents when needed
4. Do all of your patients on therapy have to have a Right heart catheterization before starting treatment?
if they answer no then you need to keep looking as a Right heart cath is standard of care for PAH diagnosis
5. Do you participate in clinical trials?
if not then you won’t have the option of using new agents for PAH before they are FDA approved
6. How many doctors will I be seeing?
If the group is too large you may have trouble getting to know or getting known by anyone and spreading the patients around too far within a group may limit how much experience any one doctor in the group can get in treating the disease
These are a good start toward evaluating who should evaluate you for PAH or other conditions that can be easily confused with or accompany PAH. After all of the above you have to meet and establish a comfortable working relationship with your treating physician.
Now more doctors and patients are aware the disease exists and many more patients are found who are suspected of having PAH and major medical centers no longer have the capacity to screen and treat all of these newly suspected PAH patients.
One common problem is that over 66% of patients suspected of having PAH really have other conditions such as left heart disease (particularly a condition called Left Ventricular Diastolic Dysfunction) that can mimic PAH but that are actually worsened if treated with PAH medications.
Doctors who finished their training before about 2000 will have had little or no useful training in diagnosing or treating PAH and to keep up must have obtained most if not all of their training and experience in PAH diagnosis and treatment after completing their formal residency and fellowship programs.
PAH is a hot area of research and in the last 10 years or so we’ve gone from a single FDA approved therapy to now having 10 approved therapies with many more in various stages of development. Unfortunately, most pulmonary and cardiology doctors have been far too busy to develop the knowledge and skills required to properly screen and treat patients with this still relatively rare disease.
What is a patient to do? There are some sources that can help. One is the Pulmonary Hypertension Association
http://phaassociation.org
They have lots of information for patients, caregivers, and physicians about PAH and they also have a searchable doctor directory where you can find a doctor who has an interest in and experience in diagnosing and treating PAH. Many doctors also post information about their practices so you can get a feel for the volume and complexity of patients they treat.
Find a Doctor who treats PAH
If you find a doctor in your area you’d like to consider seeing you will want to ask a few questions to help evaluate their capabilities:
1. How long have you been involved in treating PAH patents?
experience is good
2. How many patients do you have on PAH specific therapy?
doctors treating fewer than 5 or 10 patients are probably dabblers and not really committed to this specialty area
3. How many patients have you treated with PAH specific oral agents, inhaled agents, and parenteral agents?
you want a doctor who can use any or at least most of the available agents when needed
4. Do all of your patients on therapy have to have a Right heart catheterization before starting treatment?
if they answer no then you need to keep looking as a Right heart cath is standard of care for PAH diagnosis
5. Do you participate in clinical trials?
if not then you won’t have the option of using new agents for PAH before they are FDA approved
6. How many doctors will I be seeing?
If the group is too large you may have trouble getting to know or getting known by anyone and spreading the patients around too far within a group may limit how much experience any one doctor in the group can get in treating the disease
These are a good start toward evaluating who should evaluate you for PAH or other conditions that can be easily confused with or accompany PAH. After all of the above you have to meet and establish a comfortable working relationship with your treating physician.