About the questionnaire
I have recently been asked by a patient whether the paper version of the questionnaire found on this site constitutes an unduly intrusive invasion of privacy. The following is an edited version of my reply and explains some of the justification for using a pre-consultation questionnaire and also the logic behind some of the questions.
Making the diagnosis of carpal tunnel syndrome requires that the doctor integrates every possible bit of information about the patient which might help, rather than just relying on a test to tell us the answer. The use of a pre-consultation questionnaire firstly ensures that we do not forget any of the information which might help and it also helps the patient to analyse their own symptoms by drawing their attention to the sort of clinical features which we find helpful for diagnosis. Many patients for example have not given much thought to the issue of which fingers are primarily affected by the numbness and tingling until we ask them – but this is an absolutely vital piece of diagnostic information.
All of the questions are there for a reason but users may legitimately wonder just what the relevance of some of them is to CTS. Many of the answers will be found in a full reading of this website. A good example is questions relating to contraception but in fact carpal tunnel syndrome is strongly linked to female hormones and many forms of contraception are hormonal in nature. CTS is four times more common in women than men, exceedingly common in late pregnancy and about the time of the menopause, has been variably linked to oral contraceptive and HRT use, and has recently been noted to occur very commonly in patients treated with hormone modifying drugs for breast cancer. Your reproductive state and use of contraception is therefore a useful piece of information in assessing how likely you are to have CTS. The most contentious question in the set, for a UK population who tend to be sensitive about disclosing it, is the one about income, and you will therefore note that this is explicitly made optional. It is of interest however, CTS decreases in incidence with increasing income and little is known about it’s financial impact on the UK population. US studies estimate the cost of CTS to the US economy at $2 billion per year or more and I would like to be able to tell my patients what the average economic impact of their disorder is likely to be. Similar economic concerns underlie questions about usage of healthcare but it is also worth noting that CTS has been claimed to be associated with over 250 other medical disorders and that therefore a full knowledge of your entire medical history is relevant to diagnosis and treatment.
Is this being done for ‘research’ purposes and should formal consent be required before completion of the questionnaire? That is a surprisingly tricky question to answer. One has to consider what is actually meant by ‘research’ and where it overlaps with ‘learning’. The reason that I can help to diagnose CTS and advise regarding treatment of it is partly because I have been trained in medicine, specifically neurology and neurophysiology, but to a much greater extent it is because, over the last 20 years, I have seen 33427 patients with suspected CTS and I have learnt from every one of them. All doctors do this. We get better at dealing with the conditions which we see frequently because we learn from our patients but this is not usually considered under the heading of ‘research’. On the other hand, when you look at it closely, this process of learning from experience of patients is much the same process that is being carried on in a formal research project when we perform observational studies of a disease. It happens that I keep my clinical records in a computerised format, as do most general practices and some hospitals, so it is relatively easy for me to answer questions such as ‘How many patients have I seen with CTS who use a keyboard for more than 8 hours a day’ – something I would never be able to do from my unaided memory. However I do not consider this sort of thing to be ‘research’ for which one has to seek patient consent. Essentially I do not accept that patients can demand that I forget everything about them after they have concluded their consultation with me and anyone who I see as a patient has to accept that a part of the transaction involves me learning from them as well as offering them advice and treatment.
So do you have to complete my questionnaires? That is of course entirely up to you. You have a right to withhold any information you choose from the medical professionals who you opt to consult but you should perhaps give some thought to whose interests you are serving by hiding things from someone who you are consulting in the hope that they can improve your health in some way. The doctor-patient relationship is, by definition, not an equal one. The very reason for consultation is because the doctor knows more about how to diagnose and treat CTS than the patient. If this was not the case you would not consult in the first place. Ultimately you either trust doctors or you do not and you have to make your own mind up about each one of us that you encounter. Once you have decided that a particular professional is someone who is genuinely trying to help you I think that it is then in your own interest to give them as much help as they ask for in dealing with your problem. including divulging all information that the doctor thinks is relevant.
The questions as they appear on this site are arranged differently to the paper version which has been used for many years in the Canterbury neurophysiology department. They fall into various categories as follows:
1) Items which are known to be useful in making a diagnosis of CTS
2) items which might be useful in diagnosis, but which have not been clearly shown to be so yet
3) items which help in measuring the severity of symptoms, but do not contribute to diagnosis
4) items which are relevant for choosing a treatment once the diagnosis has been made
5) Health economics questions - we are seeking to assess the impact of CTS on health services and the wider economy, especially in the UK where this has been comparatively little studied. These are the questions which are closest to being pure 'research' but some of the questions from our original health economics questionnaire (a fairly standard item called a client service receipt inventory) have turned out to be useful in other ways also.
Revision date - 4th February 2011