title: Are internet sites providing evidence-based information for patients suffering with Trigeminal Neuralgia?
abstract: Trigeminal neuralgia has a variety of treatments with variable efficacy. Sufferers present to a spectrum of disciplines. While traditional delivery of medical information has been by oral/printed communication, up to 50-80% patients access the internet for information. Confusion, therefore, may arise when seeking treatment for trigeminal neuralgia. We evaluated the quality of information on the internet for trigeminal neuralgia using the DISCERN© instrument. Only 54% websites had clear objectives; 42% delivered on these. A total of 71% provided relevant information on trigeminal neuralgia, 54% being biased/unbalanced; 71% not providing clear sources of information. No website detailed the side-effect profile of treatments; 79% did not inform patients of the consequences/natural history if no treatment was undertaken; it was unclear if patients could anticipate symptoms settling or when treatment would be indicated. Internet information on trigeminal neuralgia is of variable quality; 83% of sites assessed were of low-to-moderate quality, 29% having 'serious shortcomings.' Only two sites scored highly, only one being in the top 10 search results. Websites on trigeminal neuralgia need to appreciate areas highlighted in the DISCERN© instrument, in order to provide balanced, reliable, evidence-based information. To advise patients who may be misguided from such sources, neurosurgeons should be aware of the quality of information on the internet.
authors.affiliation: Consultant Neurosurgeon, Western General Hospital, Edinburgh, UK.
authors.forename: Andreas K
authors.initials: AK
authors.lastname: Demetriades
authors.forename: Varinder Singh
authors.initials: VS
authors.lastname: Alg
authors.forename: Carl
authors.initials: C
authors.lastname: Hardwidge
mesh_terms: D032882:Comprehension; D054626:Consumer Health Information / Q000592:standards*; D005260:Female; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D007255:Information Services / Q000592:standards; D020407:Internet / Q000592:standards; D008297:Male; D010353:Patient Education as Topic / Q000592:standards*; D011785:Quality Assurance, Health Care / Q000592:standards; D012307:Risk Factors; D014277:Trigeminal Neuralgia / Q000175:diagnosis*
keywords: DISCERN questionnaire; Trigeminal neuralgia; evidence-based medicine; internet; patient information