• trigeminal neuralgia;
  • consumers;
  • medical treatment

Objective.—To assess consumers' views on treatments used for trigeminal neuralgia and to compare their assessments with those of clinicians.

Methods.—A short self-administered questionnaire was distributed to 133 individuals with trigeminal neuralgia and 21 clinicians attending national support group meetings in the United States and United Kingdom.

Results.—Responses were obtained from 82% of those with trigeminal neuralgia 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 effect (mean ± SD, 4.9 ± 1.8). The clinicians underestimated the number of side effects, but both groups agreed that drowsiness and cognitive impairment are side effects that are particularly disliked. The mean current quality-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 sufferers would improve the evidence base on which decisions can be made.