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. 2020 Nov 10;21(1):130.
doi: 10.1186/s10194-020-01198-z.

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

Lasair O'Callaghan  1 , Lysbeth Floden  2 , Lisa Vinikoor-Imler  3 , Tara Symonds  4 , Kathryn Giblin  5 , Chris Hartford  2 , Joanna M Zakrzewska  6   7
Affiliations

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

Lasair O'Callaghan et al. J Headache Pain. .

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.

Keywords: Facial pain; Microvascular decompression; Multidisciplinary approach; Patient related outcomes; Trigeminal nerve; Trigeminal neuralgia.

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Conflict of interest statement

Lisa Vinikoor-Imler and Lasair O’Callaghan are and Kathryn Giblin was employees of Biogen at the time of this manuscript preparation and own stock/stock options at Biogen. Kathryn Giblin is currently an employee of Sarepta Therapeutics, Inc. Lysbeth Floden, Tara Symonds, and Chris Hartford are employees of Clinical Outcomes Solutions, which received funding from Biogen to conduct the study described here. Joanna Zakrzewska has a consultancy agreement with Biogen.

Figures

Fig. 1
Fig. 1
Survey Response Results
See this image and copyright information in PMC

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