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Patients turning up with folders full of printouts from the internet are increasingly common sights in outpatient departments. The response from clinicians often tends towards annoyance and even suspicion. Furthermore, a disease such as multiple sclerosis is linked to much mystery (concerning causes) and controversy (concerning treatments), and as such, the internet abounds with sites making all manner of claims. Physicians therefore need to be able to recommend informative and reliable sites to patients.
The MS Society (UK) provides an easy-to-use and comprehensive web site (www.mssociety.org.uk). Particularly note worthy are downloadable booklets and information sheets. “Newly-diagnosed” patients are sure to find many of these highly useful. Other sections in the web site include links to local support groups, information on working with MS, insurance issues, and pages for carers. The site also gives an overview of research activity in an accessible and balanced way.
Equally impressive is the US equivalent (www.nationalmssociety.org). Again, information is laid out in a user-friendly way with a multitude of links to other web sites pertaining to the disease. Of particular note to the neurologist, however, is the section on clinical study measures, which sets out in detail, with downloadable forms and user guides, the wide variety of rating scales that have been used in clinical studies of MS, providing a useful resource for all those involved in the management of the disease.
The internet has revolutionised so much of the way we all live our lives, and patients with neurological diseases are increasingly turning to it for information. Control and regulation of information on the internet is a problem, but perhaps if neurologists were to become more involved in writing patient group websites, we could enhance the service we give to patients and prevent some of the more ludicrous medical claims coming to the attention of our patients.
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