Anyone get a copy of their PFTs at clinic visits?

[Gammaw]

Every clinic visit for my 9 year old starts with a visit to the lab for PfTs. They print out a copy of the report with all parameters and graphs. They won't let me see it or give it to me, but they then hand carry it to the doc. The doc then shows it to me briefly if I ask for it and he does discuss the results. I basically get info on the FEV1 and the trend although he will answer my questions if I have the presence of mind to ask intelligent ones. I have repeatedly asked for a copy, but I'm told it's not allowed. I have to request it from medical records which takes a couple of months, lots of paperwork and of course a fee. I think this is ridiculous. I wrote the Administrator once, who agreed it should be provided but that never happened. A new administrator came on board and now they say that their legal department says they can't give it out without a medical records request.
Now, I'm frustrated. I want to study them, understand them, lay them side by side myself and look for trends. I want to consider what was going on that might have precipitated changes and therefore what I might be able to do toimprove function. I want to consider the season, any adherence issues, what machines we were using, what meds we were on, etc!
Does anyone get these reports from their clinic during their visit? Have you found them useful or do you think they could be and in what way. I think I'm about to wage a campaign......

 

[2005CFmom]

We don't get the actual report, but we get the PFT result in an Excel type form. All the the values are listed out along with all of the previous scores. We also get a graph that shows FEV1 and FEF 25-75 over the years so that you can visually see the drops and rises in those scores. We don't do PFT's in the lab. The respiratory therapist comes to the room during our visit and does them with a hand held device.

 

[Aboveallislove]

How weird and annoying! I have copies from infant ones...we haven't done older yet. But our cf clinic is all automated and I can go online and pull results from labs, cultures, etc., so I'd think pft would be there too! Have you asked the doctor or nurse in the exam room if they can do a quick print off or photocopy or just the lab and admin? I'd think the doctors would be more helpful...if not, I guess you gotta jump through hopes but maybe also engage whatever parent group for cf clinic they have to change practice. I'm sure there's no law...it's the hospital trying to prevent lawsuits from folks screwing up and giving to room people. Augh. Good luck.

 

[Gammaw]

CFMom your clinic policy sounds great. I would love to see a printout like that. Can you tell me how you personally use it? What do you find useful about it? I'm trying to build my case even beyond what I see. And yes, AboveAll, I have asked the nurses, the docs, everyone. I have suggested that the respiratory therapists simply hit print twice rather than once when they're done. Im about to start taking pictures on my camera when they show me the report. How silly. Im sure I would upset someone if I do that. The last time when I got a bit pushy about it again, they sent in someone who specifically was briefed to explain to me why I can't have them! Heavens. You'd think I was asking for top secret military defense data . . . . Which appears frankly to have easier access. I really think the lack of access compromises my DS's care.

 

[jshet]

I am handed the report as soon as my son comes back from his PFT. They give a seperate copy to the doc., who always sits right beside me and we go over everything. It had always been done this way. I just assumed this was the norm.

 

[Gammaw]

Jshet, thanks for answering. This seems to be trending that way - giving copies to the parents as a matter of course. I thought my clinic was being ridiculous, but . . . . Would you mind telling me how it's used in discussions and how you use it?

 

[jaimers]

at my old clinic (UNC) i wasn't allowed *technically* to have a copy of my own PFTs. I would have had to request a copy from medical records. however, my RTs thought it was ridiculous and would print me a copy and then tell me that if i told anyone where i got it they would totally deny any involvement
at my current clinic (Mass General) i'm given a copy and it's no big deal. I would speak with the clinic social worker or see if there is a patient/caregiver advocate of some type that can help you.

 

[jshet]

We look at the comparison of the last year and compare it to where we are today. My sons nmbers hsve been pretty consistent. He does explain what his trend is and where his lung function falls overall. He also che ks everytime to see f his clubbng has gotten any worse. He answers any and every question i have, no matter how many i have.
He called me recently regarding my sons yearly blood work because my sons IgE is very high. He had my sons PFT report in front of him before he even called me. He is concerned he may ABPA, and was gong over his test and was relaying what he thought based on his recent PFT. He even has the bloodwork slip waiting for us so we can get it done and have the results at our next appointment.
Love our doc. He has even written a book, and is probably one of the nicest people i have ever met.
next time you go, tell the tech. you want a copy of the report and wait outside the
PFT door until you get one.
We go to .children's Hospital Pittsburgh, and they willingly give me copies of anything i want or have beeded over the years. I am just so surprised about the way your clinic is working.

 

[Gammaw]

So far then 4 out of 5 clinics provide. Wonder if I could take a poll! How can UNC and Riley think they shouldn't give them out? But so many others do? U of M, Pittsburgh, Mass General, and wherever CFMom goes seems to treat it as a significant piece of info for the patient to have. That's how I see it too! It feels like I'm committing a crime when I look at one at Riley. Sheesch.

 

[stephen]

Gammaw;

I get copies of ALL test results: PFTs, Blood Tests, CAT Scans, X-rays, and Sputum Cultures. I have them going back years, from different doctors, CF Centers and labs. I can’t recall the last time I was refused a copy after asking for it. Often, it’s the doctors themselves that offer to give me a copy. If a doctor refused to give me a copy of test results or reports, I probably would look to go elsewhere.

Having copies of the test results is extremely useful when going to get another opinion, or even seeing another doctor for a completely different issue.

With the PFTs, I always request a copy from the technician immediately and get it before the doctor. As the test is being performed, I’m usually able to watch the results of the FEV on the computer screen. It feels like this actually helps since I can watch the current run and try to beat the previous one as I’m exhaling.

Having the PFT results lets me enter them in a spread sheet that contains the results, date, and location. I can track the results going back 25 years. Surprisingly, it appears that different CF Centers and Labs consistently get higher or lower results than others.

Try to get all test results, even if you don’t have a use for them now. They may come in handy very at some time in the future.

If you continue to have a problem, “wage a campaign…”

 

[Gammaw]

Stephen, can u share which clinics gave you the reports? And I've never considered asking for a printout of the CTs, xrays, labs, etc before - altho I'm not sure why! Do they give them to u automatically or do u ask for them? Most of those are generated long after u leave, so how do u get them? Through medical records?

 

[Aboveallislove]

FYI I've had lab results and cultures sent. I just ask nurse to send a copy after she calls with results. Now I just see on patient portal. Not the actual X-ray but the write up.

 

[Gammaw]

Well heck. I've never thought of that either. I would love to have that but it would be so helpful! Our clinic doesn't even call with results anymore unless it's something new or dire and they are giving a new prescription. I just get a handwritten form with a check box for labs. And I never even hear reports from the chest x-rays unless I ask - and then I get just a "no significant change." That has always bothered me. I thought I was pretty proactive and now I'm wondering.....keep talking to me about your experiences please people. I'm getting smarter.....

 

[Michellene]

They can give you a copy. Per HIPAA regulations they need only remove any protected health information (PHI) from the report. I ask for a receive copies of mine at each clinic visit. They have attempted refusal, I remind them of HIPAA and they give me a report with all PHI blacked out (usually with a sharpie).

 

[Deb]

I have a copy of every PFT I have had done over the last 30 years. I keep all records in notebooks (I have several) Recently I put all of my PFT results into a spreadsheet that I can pull up on my phone so I always have the latest results available if needed. Like others have mentioned I like to keep track of circumstances surrounding these. (i.e. have been sick with a cold, just finished a round of antibiotics, etc) I also think it is important for patients/parents to review these. Years ago my functions dropped drastically and no one could figure out why and they were considering meds or a bronch to check things out. After looking my closely at the report once I got home I noticed that the RT had typed me in as male vs. female. Really throws all the numbers off. Once that got corrected everything was fine.

I go to Indianapolis and they used to readily print me a copy. Their new policy says they are not supposed to but I haven't found an RT yet that refused when I asked. I am also currently in a drug study in Denver and they can't give me copies but they allow me to review the report and I enter the numbers into my spreadsheet.

 

[Rosie55]

My daughter has been going to UNC for 13 years now, peds and now adults and we have always gotten the PFT report. An actual copy of the graph of the PFT's as well as a print out of the numbers for that PFT and years past. We never even had to ask, it was automatic.

 

[Hail2Pitt]

Yeah, that's really weird. I always get a copy of my PFTs - I've been to three different clinics, and they all gave me copies without me asking. I like to track my results as well. And, when I have a particularly good result, I hang it on my fridge.

 

[Aboveallislove]

to clarify: I call to request the results of all tests and then they call back and that's when I use to ask for results. Now I just ask for them to "push" out to the portal. That way if something is kinda high, like glucose, I look back to see if it was prior year or not.
I agree that they CAN provide. They just have "risk management" which says not to unless they complete forms because they don't want to risk liability for providing medical records in violation of Hippa. That's why the portal works so great because you get access per Hippa and then they don't worry. Some places are more risk adverse (and more compliant to management's silly cya rules).

 

[keefer11]

When I am at clinic I request a copy of my results and the respiratory therapist gives them to me. BUT if I go see my doctor outside of clinic and see a non-clinic respiratory therapist and ask for a copy they tell me I'm not allowed to have a copy for confidentiality. Doesn't make sense since it's my confidentiality. Oh well.

I use my results to compare each clinic visit results. I compare a year, I compare 2 years, 3 months, etc. Generally my docto just compares to my previous results and only tells me my FEV1 so I like to have my results for my own sanity.

 

[jshet]

Aboveslllove, our hospital has the patient portal also. It is wonderful. I agree it is so nice to be able to compare the blood test results to prior draws. My son sees 6 specialists and to be able to keep up with all of his info and results at one place is awsome. I also love that i can send a message and get a reply super quick from any of his docs.