Why Do People Decide To Participate In Clinical Trials and Why Do People Decide To Continue In A Trial?

I would like to know why people decide to participate in a trial, especially when there are still unused treatments available to them, and why do they continue in the trial? I do know the standard answers like altruism, getting cutting edge treatment before its generally available and there are no other available approved treatments. But what is really going on in the minds of people as they make this type of decision? Are the three explanations I mentioned reality or are there other dynamics that lead a person to a trial and let them stay on a trial despite side effects and no evidence that they are improving?

Joel

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32 Replies

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  • Great question! Looking forward to hearing other responses, but I think you've really hit the top reasons why people participate. Of course everyone is different and I think each person's decision is based on their own circumstances. For me, I signed up for a clinical trial for breast cancer because it was offered at my hospital, did not prevent me from taking the standard of care treatment, and was evaluating if women had a better outcome by adding another drug to their treatment. I thought, "why not" and was actually put in the non-drug arm, so my treatment was the same as not participating in a trial. Of course if I was put on a drug and found that I was not improving, I would most likely stop that trial. But again, everyone is different.

  • Would you have felt the same about participating if the trial had been double blind?

    cx

  • Great question...not sure. I would have certainly had to educate myself on what that might have looked like before making a decision to participate.

  • Thank you for your reply rminnick. Yes I agree there would be many questions re the positives and the ramifications.

    Hope you are feeling good.

    cx

  • Double-blind trials on humans are not very common because of the ethics question.

  • I would be interested to see what evidence there is with regard to your statement andyw.

    c

  • Probably I expressed that badly, so sorry for that. The ethical questions around giving someone a pill that does them no good must make testing more difficult. I think that must then make stop some tests going ahead.

  • Thank you for your reply Andy. I think it makes testing (for the patient) much more difficult but I can see the benefits of nobody - patients, researchers etc - knowing who is getting the drug which is being trialled. There has been no specific trial for non cf bronchiectasis, certainly for the 68 years I have had it, until recently. Of those I have seen they appear to be double blind eg

    clinicaltrials.gov/ct2/show...

    love cx

  • Andy,

    Trials do not give a pill that does nothing unless there are no approved treatments. Protocols call for the investigation treatment to be compared to the standard of care. This means that the participants who do not receive the investigational treatment do receive the standard of care which is the exact same as they would have other wise received.

    Joel

  • I'm proud of you for doing that trial.

  • I participated in a clinical trial because I thought it sounded like a feasable treatment and I wanted to pay back for the blessings I had received up to that point.

  • Yes,a way of participating in hope instead of narrow mindedness .

  • Hi Joel, sometimes it is because some treatments are more available on clinical trials than NHS. Trials are often more personal too although your results are anonimous, infact sometimes even the patient never knows the outcome of their help. It also improves the future treatment of some illnessess for our future generations. All trials allow you to come out at any time and not all trials are for fit people, they help to test new drugs for certain illnesses.

  • When all else fails and you still have the fight left in you, you are willing to try anything.

  • Try anything!

  • Yes, you hit the three biggest reasons. I also like the additional attention, tests, monitoring my status.

  • This is another great point. Many times, the "extra" care and attention given in a clinical trial is a huge benefit.

  • You added a couple of caveats at the end: "despite side effects and no evidence they are improving". I participate (in nearly 20 so far), because: 1. I have lived a great life so far and no one directly relies on me. It's time to give back.

    2. I have children and grandchildren and I would not like them to face this.

    3. In trials I have access to some of the best MDS in the country.

    4. It is extremely difficult to find people to participate in trials and I would hate to have great ideas go untested.

    5. I learn a great deal about disease and disease processes.

    6. I share my experiences with others and am told I provide great inspiration through public speaking and my book. This gives me great satisfaction and yet another reason for carrying on.

    7. Occasionally (as with my most recent trial) something works and I have the benefit of reduced symptoms.

  • Give back,if only we all could do that....

  • You can find a way to give back.

  • All of the reasons you and others have mentioned plus.... in my case, my only real choice when treatment needed was ibrutinib. I was wary of the side effects people were experiencing. I was treatment naive and wanted my first treatment to be as effective as possible to put me into at least a partial remission while new drugs were advancing. I had read about and talked to specialists about a second generation BTK inhibitor (Acalabrutinib) which was showing as good results but less side effects than ibrutinib and was more targeted. I wanted it!!! I was fortunate to get into a clinical trial at NIH for acalabrutinib 9 months ago and I already having a very, very good response. I am thrilled. The other reason is the elephant in the room... cost. Non-chemo drugs are very, very expensive and insurance companies don't reimburse well. Trial drugs are free.

    In my case, the cost wasn't the main factor, I wanted to be part of advancing new medications and the 3 docs I consulted with felt that Acalabrutinib would be a good choice for me

  • I'm with you on a different test by N. I. H. ,the funding cuts that are surely in process now hopefully can soon be reversed..

  • i have a very aggressive cancer. I felt SOC treatment, while "Standard" didnt provide me with enough options. Under the clinical trials i get the scans and other tests far more often than under SOC which i feel gives me a better early detection mechanism would plus i get SOC as well. Yes i also do not want others to experience what i have so if something is gained from it, then thats a bonus.

  • Thanks for participating !

  • What is soc? I'm on a test also.They do good testing, so you know your status at least.

  • I am running out of options and the trials cost me little or nothing for now. My Part D provider will not keep overly expensive prostate cancer drugs on their formulary. So unless the drug company pays for them in a trail I would not be able to afford them.

  • It would be barbaric not to fund these studies...

  • Health Unlocked has another community called "Understanding Clinical Trials." You might want to check out the various narrations of experiences that have been offered, including mine (StarSafta). You will find them at:

    healthunlocked.com/understa...

  • This is the group, understanding clinical trials

  • I really appreciate everyone's responses. I am now going to ask another question.

    Are there things that would have made a clinical trial more interesting to you? In other words are there things that could be offered to you that might have made a specific trial morning interesting to you or more likely to have had you enroll?

    Joel

  • Two things. In my most recent trial, they did not pay travel expenses.

    If the remedy works, there is no followup for the patient to keep on using it. The trial (phase 1) and our role in it, are defined. I keep wondering what will happen if my symptoms return and I have no recourse to additional resources. Oh well.

  • I went on the Tak-700 test because I was in poor condition and my thought was to be open to almost anything..Things have come around nicely compared to where I was then..Positive results for me thus far so no reason to stop.We didn't know if I was going to make it so part of me said,"well if I don't benefit maybe I can help others"...Somebody has to be the guinea pig and take a chance..Like I said, I was looking for any hope..I believe in the power of modern tech to come through with great breakthroughs in the coming years..Google alone has a mission statement to find cures and they have vast resources. Hope springs eternal..Without it I'd be through..

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