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CF CENTER RANKINGS
- Thread starter anonymous
- Start date
Hi Paula,
For a number of reasons, the CF Center rankings are not made public. This article offers an outstanding explanation of why. <a target=new class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content/?041206fa_fact">http://www.newyorker.com/fact/content/?041206fa_fact</a>
Of course, we would all like to know where our center lines up, but if not "naming names" helps improve every CF center, then I am all for it.
Chris
25 w/cf
For a number of reasons, the CF Center rankings are not made public. This article offers an outstanding explanation of why. <a target=new class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content/?041206fa_fact">http://www.newyorker.com/fact/content/?041206fa_fact</a>
Of course, we would all like to know where our center lines up, but if not "naming names" helps improve every CF center, then I am all for it.
Chris
25 w/cf
HollyCatheryn
New member
There was an article in one of the recent issues of CF Roundtable about the CF Rankings and the differences between clinics and the fact that the ranks are not made public. There are some things you can do that can help you be informed. You can ask very specific questions of your current or potential clinic and other clinics in the area or around the country. Some good questions would be:1) How many adults (or children) with CF are seen at this clinic?2) How many years have the CF Specialists been practicing in CF each?3) In X situation, what is the standard protocol?4) How often are the patients seen routinely?Any other questions that are specific that can be compared to the answers of any other clinic you call are helpful. You may find that one clinic has two young doctors that have only been CF specialists for a few years each, while another may only have one specialist, but he's been there for 20 years. You can also ask under whom the specialists were fellowed. You can interview the doc(s) and ask how he differs in his views or approach from the docs under whom he fellowed. You can also compare standard approaches to different situations to see what fits your needs best. A clinic may or may not be able to give you a life expectancy age, but if they can it is good information, but needs to be weighed carefully with the population they are serving. One clinic may have a lower age, but may serve a poorer area and thus have people with fewer resources to care for themselves than another clinic with a higher age. Also, if the clinic is a bigger, better one they may serve people with more severe cases that some of the smaller satellite clinics feel capable to handle. That is one reason why the rankings are not publicized, because the mitigating factors are so complicated. You can still shop around. Just because you start being seen at one clinic, doesn't mean that after a few appointments or a hospitalization or at any point really, you can't transfer your care if you are dissatisfied.Depending on your point of view and needs, you may also consider having a family practitioner or pediatrician as the primary doctor and seeing a CF specialist just for CF care. Many people with CF end up just seeing the CF doc as primary and depending on the situation it may or may not be the best option.
Thanks for the article Chris, it was very interesting. I think what I got from it is that we need to make sure WE are doing everything we can. Don't skip treatments, and be aware of your PFT's. If they even slip a little bit be on your CF care team to help you bring them back up! The best center was not happy with 80-90% they aimed for 100%+. Like the old saying, aim for the stars and you could hit the moon!
This was a great article and a great line of posting. Can anyone tell me abou their experience in getting a second opinion or working with a second care center? I am tempted to get a second opinion... but don't really know how it would work. I like the docs that we work with now... but if there's something better... I'd be tempted! Thanks for your insights!
HollyCatheryn
New member
I usually say something like,"I've made some phone calls and have done a little reading and I wonder about X. Can you tell me if this might be an option for me? Why don't you think that is a good option? Would you be willing to let me give it a try for a week (or month or six months) before we try your suggestion?"This lets them know that you are actively interested and involved in caring for yourself (you'd be surprised how many people, even with CF, are not) and that you respect their opinion. You want them to know that you trust them and are willing to work with them. They need to know that you are willing to be flexible and compromise. If they see your willingness to put in the energy and time as well as to compromise (rather than just belligerantly refuse), they are more likely to give you what you want. There are times when you have to say, "I understand what you are saying and your concerns. However, I am not comfortable with this and am not willing to do it. What other options can you come up with?" You can even offer to sign an AMA (Against Medical Advice) form. This states that they have advised you as to the necessary (in their opinion) course of action and you refuse to comply. You don't want to refuse outright very often, because then everyone gets a bad impression and they sort of give up on trying to help you. The best policy is to compromise and try to suggest certain options in times of ease (not in stress) whenever possible, to bargain in other instances (if you let me try this for X amount of time, then I'll try your suggestion for X amount of time), and to only refuse if it is absolutely necessary. I have had to refuse and it hasn't ever hurt my health or my relationship with my team. Wisdom is required - and tact.You can also always feel free to print off pages from medical research reports and bring them to your team for evaluation if you are wanting to try something. That way it isn't just your word against theirs. This is a great help to them because there is no way they can possibly spend hours researching different issues or therapies for every single patient they see. If you can research for them and bring them the most thorough or most current studies that saves them time and impresses upon them your desire to be part of the team, rather than just a patient to be told what to do (some people want that).