Selecting Your CF Center and CF Specialist

Cystic Fibrosis is a complicated disease. Patients with CF should not be grouped together in terms of the treatment and care we receive. Every CF patient is unique and experiences different manifestations and complications of the disease. When a physician is treating CF patients he or she may have a "big picture" view of the disease and treat all patients according to the CFF recommended therapeutic guidelines as normal protocol. However, other physicians treating CF may take the time to recognize every CF patient is different and the complexities of CF vary from patient to patient. What works for one patient may not work for another patient. And the cause of various complications may be different from one patient to the next.

In today's internet age we, as CF patients, are able to research CF centers and CF specialists. What I have found to be more valuable is the experience of patients or CF families who have been treated by certain centers and CF specialists. The Cystic Fibrosis Foundation publishes CF Care Center Data as part of a quality improvement initiative (QI) to encourage the quality of care within the CF care center network and CFF accredited CF centers. But what does this information really mean?
This information is statistical evidence of the overall picture of the CF care centers and unfortunately patient satisfaction is not taken into account.

What about the statistics of these CF centers? Aren't they important when selecting a CF center? When viewing the statistical numbers of average lung function, BMI, or transplant survival keep in mind that some centers agree to transplant patients who may have been denied a transplant at another center for various reasons (ie: certain strains of bacteria, pan-resistant bacteria, complex non-pulmonary health complications). What does this mean for CF patients? When one CF center closes the door on your double lung transplant, another center may be willing to take the risk. But what does this mean for the CF Center's statistics? It means that centers who are willing to accept higher-risk CF patients (ie: B. Cepacia) for transplant experiences a decline in the center's statistics (one patient may not make a difference, but several could). Therefore, the CF Center Care Data does not fully reflect the quality of care at a particular center nor does it directly correlate to patient satisfaction. Based upon the CF Center Care Data my CF center is not #1 in having the healthiest CF patients (statistically speaking). But what I know is my CF center is ran by some of the best and brightest doctors and researchers and they are dedicated to their CF patients pre-and post transplant. I could skip on down the road to another CF center (literally just a few miles down the road) but I haven't because I am happy with my CF care and my doctor. I just wish we could get our own CF/GI specialist...but that's another issue for another day.

You have a choice!
Many patients do not realize they have a choice in their treating CF specialist. Teaching hospitals have pulmonary fellows and attendings. The attendings are what we like to call the "gray hairs" and are far more knowledgeable about CF care. For my personal CF care I prefer to have a seasoned pulmonlogist taking care of me and have been with the same specialist for eleven years. And she has been an anchor in my CF care throughout the years. Pulmonary fellows are supervised by seasoned CF specialists and patients usually see both during clinic visits when they are followed by a pulmonary fellow. Therefore, having a pulmonary fellow as your CF health care provider does not necessarily mean you are not receiving quality CF care from a knowledgeable "non-gray hair" specialist.

Talk to other CF patients who attend your CF center or a CF care center you are considering. However, also keep in mind that not every patient is going to have a pleasant experience with a doctor (even doctors have bad days). Doctors have personalities, too, and sometimes it can rub a patient the wrong way or a comment can be taken personally. Some doctors have a pleasant bedside manner, while others may be very cold and unfriendly. Some doctors are dedicated to their patients outside of office hours, while others will prefer you to contact the on-call pulmonologist. I have my CF doctor's pager number and e-mail address, but I have called the on-call pulmonologist as well. A patient or parent of a CF patient should use wise judgement and consideration when paging or calling a physician outside of normal business hours.

If you are fortunate enough to live in an area with more than one CF center, such as UNC Cystic Fibrosis Center and Duke Cystic Fibrosis Center, you will have access to multiple CF specialists and researchers. But if you live in a small town with limited or no access to CF centers you may feel stuck with a CF doctor you don't particularly care for. I advise you to seek out the best physician who meets your health care needs. If your CF doctor is impersonal, but delivers quality health care, then it's worth staying with Dr. Impersonal. If you do have a CF doctor who has a great personality, bedside manner, and knowledge--stay with your doctor as long as possible! When you have a CF physician or CF center that is not meeting your needs, do not hesitate to seek health care with another CF specialist or CF center.

1. What do you want your CF care to consist of?
2. Do you prefer CF center that also focuses on CF research?
3. Would you be satisfied, or are you satisfied, with a pulmonary fellow?
4. Do you require emergency access to your personal CF doctor after clinic hours?
5. Do you need a center that also has a lung transplant program?
6. Is your doctor willing to provide refills over the phone?
7. Will your doctor spend the time necessary to request prior-authorizations or submit appeals to your insurance company when a prescription drug claim is denied or requires prior-authorization?
8. Does your CF center have a clinic nurse dedicated to assisting CF patients for various needs?
9. Do you experience difficulty in obtaining your culture, blood, and radiological test results?
10. Does your doctor respond to you in a timely manner?