Decided to back out of the study I was doing

[JennifersHope]

Hi,

I went to CF clinic today, I was going to be particpating in a study, the soduim channel blocker one.

This was my first experience with a clinical trial, it was not pleasant at all. First of all the nurse who was going to do the intake is leaving the clinic, She is not the normal CF nurse she is more into research and she really doesn't like her current job, or at least that is the way she came across.

She was so disorganized, she kept telling me over and over how much she didn't know what she was doing with the study, that she didn't even care if I did the study because she wasn't going to be here to see the results. She was very nice and kept saying how sorry she was..

I kept telling myself be patient I am going to need patience shown to me as I am just starting out, but she isn't new, anyway, I feel bad.

I was there for a total of an hour and during that whole hour we got nothing done, she was still running around in and out going back upstairs because she forgot something, or whatever.

She handed me a stack of paper work that I was going to have to fill out each day but didn't explain to me what was what,. When I questioned her about it, she had no idea what to do with it any more then me.

Then she asked me if I had a bronchodilator with me, when I told her no, she got all flustered and said I should have brought one with me. I told her I had no way of knowing that, so then she called the main CF nurse on the phone and said :Jennifer didn't bring a bronchodilator with her like she should have, and I never reminded her to her to bring one" When she got off the phone I told her it doesn't say anywhere for me to bring one with me, so tell me what I need to bring with me to the next visit,

Again she had no idea...

It just didn't end, she kept going on and on about how time consuming the study was, and then I was looking at my watch because I was already there for a while and we got nothing done.

I worked up the courage to tell her that I don't think this study is for me and that I was really sorry. As I was saying it the CF nurse came in, I feel so bad but really it was so stressful for me to be there, and I am usually so agreeable, it takes a lot for me to walk away from something.

As usual my CF nurse was fine with it, so was the research nurse but I felt stupid. Then we made small talk, they were so nice to me about passing the boards for nursing and stuff..

I don't think I ever want to do a study again. That is not for me, it is very time consuming even if the nurse knew how the study was supposed to go, much more when she doesn't.

Anyway, anyone have any similiar experience?

 

[LouLou]

<img src="i/expressions/face-icon-small-sad.gif" border="0">

I understand completely. I salute you for even considering it and thank you as well. I wish it had worked out for you and hope that you notify CFF about your experience even if you keep your name and clinic withheld. This information will help them to better formulate clinical trials to be successful in the future. Sloppiness is not acceptable - they need to get their act together. This isn't necessarily reflecting of your clinic - they might not have been properly trained, hence, her leaving her job.

Have you taken that survey that was on here a few weeks ago about why you do or don't participate in clinical trials? This would be an excellent place for your voice to be heard.

Thanks again and I hope you consider trials in the future. Take care and congrats on being JennifersHope, RN.

 

[anonymous]

I think its the same everywhere...
I was asked by my doc, if I would take part in the study with Tobi powder inhalation. I asked him, if it would be ok with my hearing loss from the last Iv with tobramycin and he said we could make hearing tests during the study.
So I walked into the clinic (after finally getting an appointment...), I was not feeling well, very tired and had to do 3 lung function tests first. While waiting for the doctor I saw the paperwork regarding the study and began to read it. Guess what it said: you can´t take part in the study if you have already had negative side effect while taking any form of tobramycin....
So when the doc came I told her and she said "Oh yes, so you can´t take part" and I went home again...

Uli,44,Germany

 

[JennifersHope]

Oddly enough my CF nurse told me she was going to send me a question form that the CFF was putting out as to why people do or do not do the trials. I would never report the experience because I love the people so much. She may have just had a really bad day and I don't want to cause trouble.

Thanks for the congrats on being an RN Lauren.....It is so exciting

Jennifer

 

[EnergyGal]

I respect your decision. You always have to think of what is best for you. Now with your new job you do not need any stress wondering if you are in the right place in this study. They are always a risk and yes it is nice to risk your life for the benefit of others but in this case it does not sound well organized and that sounds scary to me. Be proud that you were assertive and made your decision.

 

[NoExcuses]

I would answer the CF survey honestly, Jennifer. Patients not participating in clinical trials is a huge barrier to developing more therapies..... and the CFF needs to know why.

I don't blame you for not participating in the study - I wouldn't have either if the administrator was going to be how you described. So I'm not pointing blame.

But what if this woman goes to another CF clinic to enroll patients - and no one enrolls because of her? Think about how much precious time would be wasted - time that could have gone towards finding out if this med is suitable for us CFers or not.

Perhpas you can fill out the survey anonymously. I understand not wanting to make waves - it's essential to get along with your CF care team to get the best care possible. It's just human nature. But I would really push to find a way to submit your feedback and your open and honest opinions (even your concerns about how time-consuming clinical trials can be - maybe they can come up with a better way to administer these studies!) because it will ultimately, help all of us with CF, including yourself <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sorry about your bad experience <img src="i/expressions/face-icon-small-sad.gif" border="0">

FIGHT ON.

 

[JennifersHope]

Thanks Risa, It is really hard for me to be assertive when it comes to myself. Anyone else, be it a patient, a friend or the homeless person on the street and I can be so bold and stand up for the underdog, when it comes to me, I tend to cower in the corner. It took a real lot of self talk for me to say. " this study isn't for me" that is all I could get out of my mouth... which in all honesty is much better then in times past, though I did renag and say, Okay I will do the study, but they knew I was uncomfortable.

She was super, douper nice, really she was. I probably wanted to leave for 30 minutes before I could manage to say I did, and they were so understanding about it, which made it worse for me...

Amy, I agree with you about being honest with the survey, the women that was in charge of the study is leaving the end of the week, she decided she was ready for a change from CF, she is moving on to oncology.

If I am asked in an anonymous way, I would say so, but add that they were very friendly and nice about it. I have learned that being in my profession, you never burn any bridges, you never know who is going to be your next co worker or boss.

I also all for clinical trials, I think more people need to do them, but certainly understand why they don't.


Jennifer