Tips for selecting or verifying hospitals

[Guest guest]

Finding the best hospitals and medical facilities for a given condition

is always difficult. It would be great if we had ratings of hundreds of

persons with our same conditions. But, we don't. We do look for first

hand experiences where we can find them. For instance, I would feel

great about National Jewish for PF just from those on this forum who

have been. Talking to doctor's with expertise who would know is good.

However, be careful that doctor truly is expert in your specific

condition.

What are we looking for:

1-I think we want to find a facility with an excellent reputation and

track record. There are some ratings for that such as U.S. News and

World Report Hospital Ratings.

http://health.usnews.com/health/best-hospitals. Now, unfortunately those

ratings are in general medical areas.

2-Is our specific disease an area of concentration for that hospital. In

our case that is often measured on whether they have an ILD center and

are engaged is it as a specialty. A listing such as IPF Centers of

Excellence may be used, but not being on that list doesn't automatically

exclude. For instant, Temple and Shands both have ILD centers and we

have members very pleased with both. You can generally find this

information as to specialization on the hospital's website. They do show

their specialties. Other sources exist for other conditions. For

instance, phassociation.org has a very good listing for doctors expert

in Pulmonary Hypertension. If you are looking for a transplant center,

then Unos.org has detailed information including number of transplants,

conditions, waiting list, and one year success rates.

3-The doctor's credentials. Typically if you go to a hospital and find

the specialty or something such as their ILD center, then you can find

the doctors who work in that center. You can review the information on

them, their education, their experience, and their areas of

concentration. Even within ILD centers, you may find one of the doctors

more appropriate because of your specific condition.

4-Call and ask questions. Get a comfort feeling there. Ask how many

patients they have with your condition. Don't be shy about inquiring. It

also gives you an excellent chance to see how you feel about their

communication and your ability to work with them.

I will walk through a decision making process I've recently been through

just to show the information. My rheumatologist especially wants me to

get another rheumatology opinion. I decided that I want to go to a

center that can look at my IPF again with the Rheumatology issues

(originally Undifferentiated connective tissue disease suggested but no

one has been able to diagnose anything specific. My labs go up and down

and in all directions). I also want them to be able to look at my long

list of conditions and figure out any connections if possible. To me

this is one final complete look to see if one can figure out the missing

link that is torturing some of the others. If so, great. If not, I will

know the best took a shot.

So, why not UTSW, 30 miles away. It is an IPF Center of Excellence now.

First, the experiences of others has been very mixed. From personal

experience of my own while some level of expertise is there wading

through their systems and reaching it is extremely difficult. You can't

reach the coordinator of the program like at other centers. I've talked

to the coordinators previously at U of Chicago, Tulane, Emory, UAB. All

very pleasant experiences. Not so UTSW. Next my rheumatologist said NO

to UTSW and his office was next door for years. So, I look at US News

and World Report and there I find not rated in the top 50 in Respiratory

or Rheumatology.

So, where to go. Well, many places pop up. Rheumatologist's first choice

was Mayo but Duke was second. For some reason he didn't recommend

Hopkins even though many consider them the best. He was fine with

National Jewish. Well, I know the IPF Centers of Excellence. I'm going

to have to drive anyway and I've heard the most good things about

National Jewish and Duke. I have family in NC. So lets look at Duke.

They have an ILD center. The doctors concentrate in ILD's. I also know

someone happy with their Rheumatologists. The disciplines work well

together. According to US News and World Report they are 6th in

Respiratory (Note National Jewish is ranked 1st) and 17th in

Rheumatology but also in the top 20 in digestive disorders, kidney

disorders, and neurology. These are all areas where I also have

conditions.

It's very difficult to decide but its worth whatever effort and

information gathering it takes. It's also a matter of what you're

looking for and where you are in terms of diagnosis. I've been diagnosed

but if there is or was a connective tissue disease it hadn't fully

manifested itself. Maybe now it will be easier to figure out. Maybe

doctors at a teaching and research center will have seem cases as

strange as mine. I have Atypical on CT's and biopsy's and reports

everywhere. I figure this trip is worth making. I went to University of

Chicago 18 months ago and it was very good. However, i didn't go back

for follow up. I plan on staying in NC for a couple of weeks or more if

they request.

Note that I do have a local Pulmonologist I think the world of. He's

knowledgeable of PF. He's open minded. But he's not in the middle of

research and training. He however is great for maintenance as I can

always get a quick appointment for any needs.