Research Research Request

[ilibbus]

I am a research scientist working on an NIH-funded project to develop a device to aid patients undergoing PE therapy for PTSD. I am interested in talking to anyone who has undergone PE therapy to see what the compliance issues are for the at-home portion of the treatment. This would be anonymous, and would take 15-20 minutes (phone call, email, Skype, IM, etc.).

 

[Ed Norton]

What is PE therapy?

 

[Nighthawk]

Are you talking about Prolonged exposure therapy?

 

[ilibbus]

Yes, Prolonged Exposure therapy.

 

[Ed Norton]

I am currently in exposure therapy. I
usually do my homework. Sometimes it's very difficult to do, for example. I made a recording of me recounting my trauma and I am supposed to listen to it at home. I hate that tape so I avoid it. I have listened to it in five minute intervals but I still can't get through the whole thing. I have been doing exposures for about six months.

 

[Justmehere]

I have done PE therapy, including imaginal exposure via tape too.

It's hard to do because of the anxiety it produces. It helped to start with a very small event and develop some quicker relief so that I have some experience of it helping. That motivates me to keep at it.

 

[ilibbus]

Would either of you be willing to answer a few questions anonymously by email, phone, or IM?

 

[Ed Norton]

I would be willing to do it

 

[Justmehere]

Can you provide any info about your study or to verify who you are? Like other researchers who post on this site do? Just the typical info given for requests research participants.

If so, and it all checks out, I would be willing to do it as well.

 

[ilibbus]

Can you provide any info about your study or to verify who you are?

If so, and it all checks out, I would be willing to do it.

I am a research scientist with Aclaris Medical, a small start-up company in Minnesota that has received a government grant to develop a wearable monitor to help with prolonged exposure therapy. It won't let me post a link, but if you Google "Aclaris Medical", the first result will take you to the Small Business Administration site that describes the project.

We are early in the development stage, so this is not part of a research study. We would just like to ask a few questions of people who have undergone PE therapy to find out what the specific challenges are, and if the device we're developing would be useful.

 

[Justmehere]

I have written numerous grants. I found the grant info you speak of. The moderators of this site would post a link for you if sent it to them and it meets the requirements they have for posting such info in the research and studies forum.

I did discover that Mark Bly was your principal investigator but did not see your name listed.

Your medical equipment company was awarded $735,000 over the past three years to develop an ambulatory monitor for PTSD symptoms.

It does also show that somehow you are still stuck in development phase and have not yet developed a prototype.

You don't even have guidelines of a research study in place to find out what problems people experiment in terms of compliance with one of several types of therapy?

I called your company and they said your posts sound like spam to them. My guess is that this is just badly planned. You didn't even read or follow the forum rules when initially posting and posted this in PTSD pools and didn't go through the steps to have the moderators post a link to your company. Or you did, and the moderators didn't approve it. I don't know.

I'm not sure I want to be a part of ill-planned market research in a private manner at this time. I'm glad to discuss the drawbacks and hindrances of compliance with PE therapy on the open forum here. If you search the forum I am sure you can find other info too.

Frankly, it's not hard to think about why people quit PE therapy. It's extremely emotionally and physically uncomfortable to endure.

I'm curious as to how you believe an expensive ambulatory monitor could help with compliance? I personally am not sure it is worth the expense.

I personally would probably feel MORE anxious to watch a monitor show my increased heart rate and etc while undergoing PE therapy. I've done biofeedback - there are even phone apps that off ambulatory biofeedback options of all kinds for ptsd and for other purposes like relaxation and training.

But a seperate device? I don't think it would increase or help my compliance at all. I can't think of one way that it could, but perhaps you have thought of options I am not thinking of. Plus, I'm just me so maybe it would help others.

It's hard enough to endure my therapist noticing my panic. I'm not sure I want a machine to keep a record of it too. It would be distracting and weird.

In my experience, PE has been very effective but it is already very hard to find anyone that does PE therapy, as most trauma therapists do other forms of ptsd treatment. It's also very hard to afford therapy sessions. It would be hard for me to justify paying for an expensive ambulatory monitoring device while undergoing therapy that is already expensive and difficult to endure. This would relate an additional compliance issue for me personally.

The main compliance issues that I see with PE therapy are this:
1.) affordability.
2.) desire to avoid pain (normal human behavior that us amplified with ptsd)
3.) lack of trust in therapy professionals who tell you to do an expensive and painful thing to feel better - I.e. Prolonged exposure therapy

What would help me personally to comply / has already helped me is:
1.) ptsd destroying my life - is high internal motivation to get well
2.) a counter-phobic attitude
3.) starting with a small trigger
4.) starting treatment in an specialized ptsd inpatient hospital unit where I saw others experience benefit from PE therapy (and where the strings and wires of an ambulatory monitor would not have been allowed)
5.) having an external reward when I do the homework task assigned (a fun event my therapist and I designed)
6.) experiencing a reduction in symptoms

I can see how an ambulatory monitor may help me be in better touch with minor improvements of my ptsd symptoms.

However, I don't need an ambulatory monitor to tell me my heart is racing when I'm listening to a tape or doing a homeowner assignment that is a part of my PE therapy.

I would like to better understand what you hope this "device" will achieve in terms of PE compliance. The grant information by your company describes it more like an ambulatory bio-feedback device and mentions nothing about prolonged exposure therapy.

I'm not sure based on what was in the grant proposal if you even understand the basis of what PE therapy is. It's not relaxation training. It's not mindfulness.

This whole thing seems very messy and unclear to me. The development phase by most medical supply companies tends to be much better designed and organized when seeking input from the very public that you may later be trying to tell the product to.

I do appreciate your efforts to gain input from people with PTSD. My personal request/suggestion is that you respect us as PTSD suffers and possible future customers enough to read the forums rules before posting and have your stuff better verified and organized before you ask for info.

 

[ilibbus]

Thank you for your honesty.

A brief background: I am working with Mark (the grant recipient) to develop an inexpensive biofeedback-like monitor that can be used at home to track stress levels at home between therapy sessions -- essentially, a more accurate SUDS score. We have developed a prototype device, and are in the process of designing a clinical study.

I apologize if I inadvertently offended you or violated the forum rules.