Consumer views on management of trigeminal neuralgia

Objective.-To assess consumers' views on treatments used for trigeminal neu ralgia and to compare their assessments with those of clinicians. Methods,-A short self-administered questionnaire was distributed to 133 ind ividuals with trigeminal neuralgia and 21 clinicians attending national sup port group meetings in the United States and United Kingdom. Results.-Responses were obtained from 82% of those with trigeminal neuralgi a and from 50% of the clinicians. All sufferers had used medical therapies (mean of three drugs), and 40% to 50% had undergone surgical treatment. All of the attendees with trigeminal neuralgia reported at least one side effe ct (mean +/- SD, 4.9 +/- 1.8), The clinicians underestimated the number of side effects, but both groups agreed that drowsiness and cognitive impairme nt are side effects that are particularly disliked. The mean current qualit y-of-life score, measured on a scale of 1 to 5 (5 = worse), was 2.7 +/- 1.5 , Only 37% of sufferers gave an opinion as to the best form of treatment. Conclusions.-Therapy leads to side effects which tend to be underestimated by clinicians. Patients currently find it difficult to make decisions about treatment. More collaborative research with active involvement of sufferer s would improve the evidence base on which decisions can be made.