The questionnaire is insufficient

I think that depends on how you know you have carpal tunnel syndrome. The questionnaire is calibrated and designed for people who have hand symptoms which have not yet been diagnosed. If you already have proven CTS then there is no point in doing it, except possibly to get the symptom severity scores. In fact I know that it performs less well on people who have already been diagnosed and treated because the treatment modifies the symptoms. Like all diagnostic approaches it is not perfect. I am currently evaluating how well it performs and on the whole it's predictions are about right - ie of people with scores less than 20%, about 1 in 5 have CTS and in some of those, when you see them, it is obvious that their symptoms are mainly due to something else. I am always on the lookout for other bits of data which we could collect and use without actually having to see the patient but there are no obvious candidates at present which are not already in there. When we find anything else that is diagnostically useful then we will modify it - have you any suggestions? JB

I found the questionnaire excellent in the way it was worded and the outcome was very informative and useful.

I do not know if this would help but would you want to know the length of time, during the night, the pain/pins& needles occur and also how long, after getting up, does the pain / pins & needles subside.

There was also no questions on what exactly happens when the person gets pins & needles e.g. do you have to physically move the fingers yourself to get them to work or where exactly do they get the pain.

Finally a comment box would be excellent at the end of the questionnaire to allow people to leave tips or extra information.

One more thing (sorry!), I have gone back to MY CTS section and can't remember what ANN and LRP is (would be useful to allow an explanation when hovering over the letters).

The duration of night time symptoms has not really been studied. I think it would be hard to record accurately. Patients have enough trouble working out which fingers are tingling in the middle of the night, let alone getting out a stopwatch and trying to work out when it stops. Similarly in the morning timing the persistence of symptoms accurately sounds a little introspective - though it is worth noting that there is a big difference for rheumatologists between morning stiffness of the hands that lasts a few minutes and stiffness which takes a few hours to wear off.

When I see people I do pay attention to the degree and distribution of pain but I rarely find it diagnostically useful in terms of distinguishing CTS from other hand problems. There is also a small group of patients who have trouble distinguishing between pain and tingling and who may be perplexed by a question about pain. The questionnaire is quite long already - when done on paper it runs to six sides of A4 - and any additional questions added to it now have to earn their place both in terms of practicality and diagnostic or prognostic utility. It's possible that we may have a researcher who is interested in pain collaborating in a few months and we may extend the questionnaire to suit their purposes.

We have thought about an 'any other comments' box but for the moment these forums are serving that purpose very well and can be used by my own patients to ask questions or provide further information in advance of their visit to me - though I am getting irritated by the spammers who are posting gibberish or adverts here about once per day at present.

ANN and LRP are the two mathematical models we use to evaluate your answers for the probability of CTS. I'm not sure we can co 'hover over' pop-ups but the expanded versions of 'Artificial Neural Network" and 'Likelihood Ratio Probability' are probably not a lot more informative to most people.

Thankyou for the helpful comments. As you can see few people have much to say about the technical content but I am keeping all suggestions in mind for revisions of the site. JB

Thanks for your feedback. I am so impressed with this website and the dedication of yourself and your team towards this condition. It would be wonderful if you could offer this service or sell the website to other Trusts, who could manage patients or prospective patients.

Thank you for explaining the two mathematical model names.

The site is freely available worldwide - other trusts are welcome to use it and one or two have expressed an interest in possibly incorporating it into their own care pathways. Primarily however it is designed to be used by patients. JB

I still think that you have done such a wonderful website and you should offer this website at cost. I have no idea of what is involved in the treatment of CTS but you could sell an individual plan website for patients to login to the website to enable them to track their own progress after they have been diagnosed and treatment has taken place. The programme could offer things like hand exercises, risk factors and for the patients to log daily/weekly their change of conditions in relation to treatments etc. If all the headings in your website were moved to the login section, you would have a comprehensive package. The patient could possibly monitor their progress and spot the activities of what causes their CTS to be worse (you could also include areas for the patient to report back for your studies e.g. stress). The programme could also include direct contact to specialists within the particular Trust for direct questions/concerns.

Well done for a brilliant site, it has inspired me to go back to my GP next week to see if he will consider a treatment sooner rather then later.

Most of that can be done now. There's no need to market it as such and I would rather keep it free and non-commercial as much as possible. The original funding comes partly from the trust research budget and partly from me and now that it's up and running it doesn't cost a great deal to keep it going. The only problem I anticipate is that if it becomes very popular I may not be able to offer this kind of personal response. JB

I would be a bit wary of a diagnosis of CTS based on nerve conduction studies if your symptoms do not sound like CTS and many orthopaedic and hand surgeons would say that you do not have CTS unless you have appropriate symptoms regardless of what you NCS show. Dropping things is a common complaint in CTS but tremor is not. I've just had a look at your questionnaire answers and the symptoms do indeed sound nothing like CTS overall. There are other causes of slow nerve conduction so one would want to know a lot more about exactly what was tested by who before putting too much weight on '30s where 50s are appropriate' - it sounds as though that is perhaps quoting nerve conduction velocities - but of which nerves? JB