Sleep Study Research - your help is needed. Is Home Video Polysomnography (HVP) a feasible method for assessing people with parasomnias?

[Daragh]

RLS-UK has been contacted by Peter Muthinji, a specialised clinical physiologist working at King's college hospital and who has a special interest in sleep disorders. Peter is currently a doctoral student at the University of Portsmouth and his research project is to explore the feasibility of using Home video polysomnography (HVP) for assessing sleep disorders.

Parasomnias (abnormal behaviour during sleep periods) are a particular group of sleep-related disorders encountered in neurology, often requiring Polysomnographic (PSG) studies in a sleep laboratory setting. Laboratory settings however have certain practical and logistical limitations and there is need to explore other ways of evaluating these disorders. One way is exploring the feasibility of Home Video Polysomnography (HVP), a home sleep study looking at same features as a laboratory based sleep study.Part of the project involves exploring the patient perspective/ preference for this type of diagnostic method.

RLS-UK would appreciate if you could take a few minutes to review Peter's questionnaire which you can find under 'News and Events' on the right-hand side of our website homepage (rls-uk.org). The questionnaire has been designed for semi-structured interview. Peter would appreciate if you could provide your feedback on the questionnaire in the comments section on this page. He will be accessing this forum page directly and you will therefore have the occasional opportunity to interact with him directly.

Please note that at this stage of the study, Peter is only looking for feedback on the questionnaire - he is not recruiting candidates as of yet. You are NOT required to answer the survey, rather to provide feedback on whether you feel it captures the elements you would expect to be asked. It is not an RLS-specific survey so there are no RLS-specific questions on it.

Please can I ask that all feedback is respectful. There are no right or wrong answers.

Thank you.

[1967]

I have conversion disorder i wandered if there was a link. I find the only thing manages it for me is co codomal nothing else

[Daragh in reply to 1967]

Thank you for your comment. Please can I ask that any comments on this thread relate ONLY to the questionnaire.

[Hidden in reply to Daragh]

wont let me click on it ??

[Daragh in reply to Hidden]

Think this may be down to your browser. Only saying this as others have been able to access it. Perhaps try a different browser if you can?

[Hidden in reply to Daragh]

what browsers do the others use please??

[ilfordonian]

Apart from a missing word (sorry, I am a finickity old wordsmith) I find the Questionnaire informative, easy to comprehend and can't think of anything that has beem omitted that I would want to ask. I also LOVE the idea of the test being carried out in my own home where I have more chance of replicating my usual sleep pattern, such as it is, rather than in a strange place. Sleeping away from home is always a problem, let alone in a sleep lab in a hospital

[Twenty-four7]

The form seems fairly straight-forward to me. Having such a test done at home makes much more sense to me

[Hidden]

Excellent idea. Easily Read what was written and understand.

[Daragh]

Need your feedback please folks... this is research which could impact on RLS diagnosis so we should all be offering our thoughts....

[Hidden in reply to Daragh]

I'm not a UK-er = /. As an American, I'd be the first

one to sign up. The home study would be completely

accurate as opposed to trying to sleep in a sleep lab.

[Jo-purple in reply to Daragh]

Hi, just found the site, and this thread.

I have severe RLS from the neck down 24/7. And many other possibly related issues (will give details if you want them).

But the reason for replying to your post here, is that I have already been to Guys and St Thomas sleep centre for an overnight assessment a few years ago. I was diagnosed with sleep apnoea, and part syndrome narcolepsy. If the results and documentation from my visit could help anyone researching RLS I would gladly give permission for full access to the records - all you need to do is ask! I'll also gladly take part in any studies etc.

I'm not very good at keeping track if these forum type websites, so feel free to contact me by email or phone if you would like to talk to me

[Hidden]

Easy to read and easy to understand and i am sure the test done at home would be more relaxing.

[thedragon]

it would be a good idea to have this done at home, but i wonder how it would impact on other members of the family. I personally dont think it would work for me in RLS investigations, as I wouldnt be able to stay in one room! I wander all around the house at night. also i have the problem that my bathroom is downstairs and my bedroom up. but the questionaire seems very explanatory and informative. hope it works out for you !

[Researcherstudent in reply to thedragon]

Thanks. I have noted this. In fact some of those with parasomnias tend to get out of bed and move around or out of the room. The link cable for allow movement of around 20 feet radius.

I would be very interested to hear what is the general view on the possibility of members of the family being caught on the video in the course of this test at home.

[thedragon in reply to Researcherstudent]

could you not have various cameras around the house, eg bedroom (not there very much) kitchen , living room....

I shall ask the other half his views!

[Researcherstudent]

A very good idea. However our IT department has not yet worked out how to synchronise several cameras with the ongoing neurophysiology and cardiorespiratory signals. An idera of tracking cameras has also been considered.

[Hidden]

This sounds fascinating and very interesting.

I understand what the questionnaire is asking but, being a pedant, I would like to correct one or two things. If this would be of help to you at all, I wouldn't mind doing it and emailing it to you

[Researcherstudent in reply to Hidden]

Hello, Please do. I would really value comments, corrections etc. Email:[e-mail]

[Hidden in reply to Researcherstudent]

I will have a go with it within the next couple of days and email it to you

[Hidden in reply to Researcherstudent]

wont let me click on it so i cant help, wish i could see it though

[gypsy49 in reply to Hidden]

i'll get you link hang on

[gypsy49 in reply to Hidden]

wouldn't let me copy it for you to read as it's office word .... ggrr sorry did try for you shame you had to miss out on reading it maybe if you ask reseachstudent he/she might email it to you to read

[Hidden in reply to gypsy49]

thats a thought

[gypsy49 in reply to Hidden]

i'm full of thoughts lol hope you get a chance to read it

[Daragh in reply to Hidden]

Researchstudent has provided their email address above and I'm sure would be happy to email you a copy of the papers.

[gypsy49]

Easy to read and understand not a bad quetionaire i'd do it in my own home but......... i don't stay in one room like most of us here we travel about the house wonder if your studying the wrong sleep disorder .... for this

[Hidden]

Firstly, thank you for sending me the questionaire.

I found it very easy to understand, also think its a far better thing to do it in your own home, and i would not present any problems for me to have it in my home.

[gypsy49 in reply to Hidden]

Glad you had the chance to read it Tallula would have be a shame to miss out

[nightdancer]

It's quite feasible and is done now already in the US. Don't know about other countries. The only thing I find troubling is the 20 ft cable. 20 feet is not going to do it for me or lots of others. We cover the entire house at night. I suppose if we were doing the home study that is proposed here, we could get through one night of 20 ft or less room to move around in. We don't get much more than that in a regular sleep lab.

[Jaynielynne in reply to nightdancer]

do you know where in the USA they are doing this?

[cicek]

The idea of doing a "sleep test" in the home sounds an excellent idea. Many people cannot sleep in a strange environment anyway so this method of testing has to be much more accurate.

[Raventor]

I found the form straight forward, easy to read and self explanatory. The idea appeals to me hugely. I would be very happy to volunteer if/when this takes off. As for other members of the family being recorded, I suggest that either; A.consent is obtained from others residing at the property or B. As this is a MEDICAL "procedure" that others are asked to sleep elsewhere just for the duration ! Shimmmples

[maesllan5]

yes I understood the form no problem, I've ended up in spare bedroom in the week, do tend to roam about in the night trying to get comfortable.

[Jaynielynne]

Needs lots of camera's for this one. I go to the bathroom, sit in the tub for

up to an hour when it's really bad. I walk, walk, walk and do exercises

all night long. I think that a lot of people jump in the bathtub to calm it.