Patient satisfaction after surgery for trigeminal neuralgia - development of a questionnaire

Objective. This project aimed to prepare a self complete patient satisfaction survey for patients who have undergone surgery for trigeminal neuralgia and then assess its reproducibility, validity and acceptability in one centre. Methods. The questionnaire, for initial use in patients who had undergone posterior fossa surgery for trigeminal neuralgia, was designed after a systematic review of the surgical literature had been performed and discussions held at the US and UK Trigeminal Neuralgia Support group meetings. It underwent several changes after input from neurosurgeons, patients, copywriter and statistician and finally contained 44 questions, the SF12, Hospital Anxiety and Depression Scale (HAD), Brief Pain Inventory (BPI) and McGill Pain questionnaire (MPQ). From the total number of 413 patients in the database of one centre the questionnaire was sent with a covering letter to 305 patients, the rest had died (25), were lost to follow up (26) or did not meet the inclusion criteria (56). One patient had bilateral PSR. The completed questionnaires were evaluated by an independent physician, neurosurgeon and patient. A repeat questionnaire was sent to 10% of the patients to check reproducibility. Results. The questionnaires were well completed with a final response rate of 92%. It appeared to be highly acceptable and reproducible but needed adjustment to improve its validity before being used in other centres and for all surgical procedures. A new questionnaire is proposed which could be used on an annual basis. Conclusions. A questionnaire has been developed for use in patients who have undergone surgical management for trigeminal neuralgia and which is acceptable to patients.