Burden of illness of trigeminal neuralgia among patients managed in a specialist center in England

Abstract

Background Trigeminal neuralgia (TN) causes severe episodic, unilateral facial pain and is initially treated with antiepileptic medications. For patients not responding or intolerant to medications, surgery is an option. Methods In order to expand understanding of the pain-related burden of illness associated with TN, a cross-sectional survey was conducted of patients at a specialist center that utilizes a multidisciplinary care pathway. Participants provided information regarding their pain experience and treatment history, and completed several patient-reported outcome (PRO) measures. Results Of 129 respondents, 69/128 (54%; 1 missing) reported no pain in the past 4 weeks. However, 84 (65%) respondents were on medications, including 49 (38%) on monotherapy and 35 (27%) on polytherapy. A proportion of patients had discontinued at least one medication in the past, mostly due to lack of efficacy (n = 62, 48%) and side effects (n = 51, 40%). A total of 52 (40%) patients had undergone surgery, of whom 30 had microvascular decompression (MVD). Although surgery, especially MVD, provided satisfactory pain control in many patients, 29% of post-surgical patients reported complications, 19% had pain worsen or stay the same, 48% were still taking pain medications for TN, and 33% reported new and different facial pain. Conclusions In most PRO measures, respondents with current pain interference had poorer scores than those without pain interference. In the Patient Global Impression of Change, 79% expressed improvement since beginning of treatment at this clinic. These results indicate that while the multidisciplinary approach can substantially alleviate the impact of TN, there remains an unmet medical need for additional treatment options.

Trigeminal neuralgia: a practical guide

“…While monotherapy is preferred, up to one-third of patients require polytherapy, emphasising these patients' unmet therapeutic need. 35 Patients should be encouraged to keep pain diaries to enable monitoring of response to treatments.…”

“…The benefit of these drugs is offset by adverse effects, which lead to withdrawal in up to 40% of patients. 35 Carbamazepine is known for its metabolic interaction with other medications, which can be problematic in elderly people with comorbidities. Oxcarbazepine causes fewer side effects and has lower potential for drug interactions than carbamazepine, though it is more likely to cause excessive central nervous system depression or doserelated hyponatraemia.…”

“…Patients with TN, especially those whose symptoms are proving refractory to pharmacotherapy, are best managed in multidisciplinary team setting with a neurologist specialising in headache disorders, pain specialist, neurosurgeon, nurses and psychologists. 35 In particular, we suggest that neurosurgical procedures for TN should only be done by experts with a high volume of cases to maintain the neurosurgical experience. Patients may benefit from a pain management programme to help them live well with pain and uncertainty.…”

“…Most patients with TN are initially managed medically, and at our tertiary referral centre approximately 50% eventually have a surgical procedure. 35…”

The Journeys of Patients with Trigeminal Neuralgia on a Background of Multiple Sclerosis

“…A multidisciplinary care pathway for these patients has been proposed which is the same as for classical TN [12]. This pathway has been shown to result in significant improvement in global impression of change [13]. It includes support from clinical nurse specialists [14] and psychology support to help patients live well with pain and uncertainly [15].…”