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To evaluate About Face, a pain management program aimed at increasing quality of life in adults living with persistent facial pain through psychology- and physiotherapy-based skill development.A total of 90 patients attended a six-session program with a 1-month follow-up between 2015 and 2019. Patients filled out self-reported outcome measures preprogram, postprogram, and at a 1-month follow-up visit.There was a significant reduction in pain catastrophizing and a significant increase in engagement in meaningful activity, as well as a reduction in pain-related interference.This evaluation adds to the small amount of existing literature on interventions aimed at increasing quality of life in patients living with persistent facial pain and provides suggestions for future research.

Trigeminal neuralgia (TN) is an excruciating unilateral facial pain, which negatively affects patient's quality of life. Historically, it has been difficult to compare treatment efficacy due to the lack of standardized outcomes. In addition, patients' perspective has seldomly been acknowledged. The aim of this study was to reach consensus on what outcomes of treatment are important to different TN stakeholders (patients, clinicians and researchers), to identify the TN Core Outcome Set (TRINCOS).A list of outcomes identified through a systematic review and focus group work was used to develop the survey questionnaire. A three-round Delphi was conducted. Participants were asked to score the outcomes on scale from 1 to 9 (1-3 not important;4-6 important but not critical;7-9 critical). Outcomes scored as critical by ≥70% and not important by15% were retained, and those for which no consensus was reached were discussed at a consensus meeting.Of the 70 participants who completed the Delphi, 26 were patients, 38 were clinicians and six were researchers. Of the 40 outcomes presented, 17 were scored as critical and no consensus was met for 23 outcomes. Agreement was reached during a consensus meeting on 10 outcomes across six domains (pain, side effects, social impact, quality of life, global improvement, and satisfaction with treatment).Implementation of TRINCOS in future clinical trials will improve homogeneity of studies' results, reduce the redundancy in the outcome assessment and effectively allow comparison of different treatments to better inform researchers, clinicians and most importantly patients, about the efficacy of the different treatments.Implementation of a 10-item core outcome set in trigeminal neuralgia will improve comparability between studies allowing patients to have faster access to better treatments.

Background Trigeminal neuralgia (TN) is a rare condition for which there are multiple treatment options available. To date, there has been difficulty in comparing the outcomes of treatment due to the variety of patient-reported outcome measures (PROMs) and their inadequate psychometric testing. The aim of this review was to assess the psychometric properties of PROMs used to date in TN and make recommendations for their use in future studies. Methods Five electronic databases (MEDLINE, EMBASE, CINAHL Plus, PsycINFO, Health and Psychosocial Instruments) were searched for studies assessing the development of PROMs or their psychometric properties in TN studies. The records obtained were assessed independently by two reviewers for their methodological quality, following guidance from the Consensus-based Standards for the selection of Health Measurement Instruments (COSMIN). Results Six studies were identified and information on five PROMs (Brief Pain Inventory Facial (BPI-F), Visual Analogue Scale (VAS), Barrow Neurology Institute Pain Scale (BNI-PS), Penn Facial Pain Scale-Revised (Penn-FPS-R) and Trigeminal Neuralgia Quality of Life Score) were retrieved. The Penn-FPS-R demonstrated moderate quality evidence for sufficient content validity. The BPI-F showed moderate evidence for sufficient internal consistency and structural validity but low evidence for inconsistent content validity. The Trigeminal Neuralgia Quality of Life score showed very low-quality evidence for insufficient content validity, structure validity and responsiveness. No evidence was found on the assessment of any psychometric properties of the VAS and BNI-PS in TN. Conclusion There is limited evidence of the psychometric performance of patient-reported outcomes for TN and recommendations for their inclusion in future studies cannot be made. The validation of PROMs in TN studies should be a priority in this field of research. Significance This review highlights the knowledge gap in the field of psychometrics of patient reported outcomes measures in the field of TN. Given the unavailability of an objective outcome measure for pain or health related quality of life, psychometrically sound PROMs are essential for assessing medical and surgical treatment outcomes in TN.

Aims To test the feasibility and acceptability of a customized six-session cognitive behavioral therapy (CBT) group intervention for adults with recurrent trigeminal neuralgia (TN). Methods Fifteen participants with TN were recruited from a specialist facial pain unit in London, United Kingdom. The effects of the group intervention were evaluated using validated self-report measures, which the participants completed before and after the intervention and at 1-month and 9-month follow-ups. A semi-structured interview was also used at the 1-year follow-up to gather qualitative feedback of the group intervention. Results Participants reported an increase in confidence in managing everyday tasks in the presence of TN symptoms, a reduction in negative beliefs about pain, and an increase in engagement in meaningful activity. All patients completed the group intervention (100% retention rate). Qualitative feedback highlighted that the group CBT intervention was helpful, and no participants reported a worsening of mood or experience as a result of the intervention. Conclusion The trends for improvement in several domains, plus the positive experiences of the participants, suggest that a CBT management program is acceptable and feasible for this population and should be further developed and implemented on a larger scale to determine its clinical efficacy.

International classification systems define trigeminal neuralgia (TN) as a disorder characterized by recurrent, unilateral, brief electric shock-like pains, abrupt in onset and termination, limited to the trigeminal nerve territory, and triggered by innocuous stimuli. The clinical diagnosis is based on history. TN may manifest as purely paroxysmal pain, or be associated with concomitant continuous or near-continuous interparoxysmal pain. On the basis of aetiology, TN is divided into three categories: (1) classical (with magnetic resonance imaging evidence of significant neurovascular compression), (2) secondary (caused by a known disease, such as tumour or multiple sclerosis), and (3) idiopathic (no cause found). Key differential diagnoses include short-lasting unilateral neuralgiform headache with conjunctival injection and tearing (SUNCT), trigeminal neuropathy, persistent idiopathic facial pain, and temporomandibular disorders.

The greatest challenges to the management of trigeminal neuralgia and other cranial neuralgias result from gaps in our understanding of the mechanisms generating and maintaining the symptoms, patient assessment, methods for measuring outcomes, lack of adequately powered controlled trials, and inherent limitations of drug and surgical treatments. There are in vitro and in vivo experimental models that remain underused in the field. Human genetic tests have identified candidate genes in trigeminal neuralgia families. Imaging methods, especially diffusion tensor imaging and some neurophysiological tests, can be used to phenotype patients at group level. Large-scale pivotal controlled trials are needed to better understand the relative effectiveness of pharmacological and surgical interventions. Disease-specific registries maintained by multiple centres are recommended that help to standardize and improve patient management. More study is needed to understand patient decision-making processes and the role of patient support groups.

The term primary trigeminal neuralgia is used for classical and idiopathic trigeminal neuralgia as no cause other than compression of the trigeminal nerve is noted on magnetic resonance imaging in the classical cases. The shooting electrical pain is unilateral, evoked by light touch, and occurs as single or multiple episodes of pain lasting seconds to minutes. A more constant dull ache can be reported. Carbamazepine, oxcarbazepine, and other antiseizure medication used as monotherapy or polytherapy are effective. Tolerability of medications and poor quality of life leads patients to surgery. Microvascular decompression offers the longest period of freedom from pain but is associated with an 0.3% risk of mortality or other cerebral complications (0.6%). Ablative procedures typically offer periods of 2–4 years of pain relief, but all carry a high risk of sensory changes which can have a significant impact on quality of life. Multidisciplinary clinics and patient support groups are important sources of support.

When patients with trigeminal neuralgia can no longer achieve adequate pain relief and quality of life becomes poor, surgical procedures need to be considered. There is a lack of high-quality evidence to support surgical treatments so all the recommendations are based on low-grade evidence of prospective or retrospective series. Microvascular decompression, a neurosurgical operation, is the procedure of choice in patients with primary trigeminal neuralgia who have evidence of neurovascular compression of the trigeminal nerve on magnetic resonance imaging. Long-term pain relief of 10 years can be achieved with minimal long-term complications. All the other procedures, including stereotactic radiosurgery, balloon compression, glycerol rhizolysis, and radiofrequency thermocoagulation, are destructive and are suitable for patients who are poor candidates for microvascular decompression including those with significant medical comorbidities. They will result in varying sensory loss and pain relief on average for 4 years. Patients should be made aware of the range of options open to them and the pros and cons of each procedure.

Trigeminal neuralgia has been known for centuries but the first descriptions that remain valid today are those by John Fothergill in 1783. The chance naming of the condition as a form of epilepsy led to the use of a wide range of antiepileptic drugs which are still being utilized. Since 1730, surgical techniques have been evolving. Peripheral treatments were first used before surgeons began to devise techniques to reach the Gasserian ganglion, which were facilitated by X-rays. With the advent of the operating microscope, it became possible to carry out effective posterior fossa surgery which carried the best chance of success. In order for patients, clinicians, and researchers to be able to communicate about conditions, internationally agreed classification system have been devised both by the pain community in general and by headache specialists. There are now several in use and there is reasonably good agreement between them.

Chapter 1 summarizes the contents of the book to which 37 international authors have contributed. It provides a short summary of each chapter. These include historical material, epidemiology, overall diagnosis, and assessment of facial pain. The diagnosis and the treatment of trigeminal neuralgia, both medical and surgical, are provided in a number of chapters. Other conditions causing facial pain are covered. The psychological impacts of these pains are discussed and patients provide their views on how they can be supported. Trigeminal neuralgia is also visualized through photographic images created by patients. Future challenges and research areas that need to be addressed through international collaborations are discussed in a separate chapter. Key general references are provided.

By general consensus, the first-line treatment for trigeminal neuralgia is pharmacological. The two first drugs of choice are carbamazepine and oxcarbazepine, both voltage-gated sodium channel blockers that stabilize the hyperexcited neural membrane and inhibit repetitive firing. Although highly effective in controlling trigeminal neuralgia paroxysms, they are frequently discontinued because of sedative and cognitive side effects. Vixotrigine, a new sodium channel blocker that is selective for the Nav1.7 receptor, has shown promising efficacy without inducing side effects in a phase II trial and is awaiting pivotal clinical trials. If the first-line drugs fail to provide sufficient pain relief or are poorly tolerated, lamotrigine, baclofen, gabapentin, pregabalin, and botulinum toxin type A may be considered either alone or as add-on therapy. During acute exacerbations, in-hospital treatment may be necessary for rehydration, titration of drugs, and, in selected cases, lidocaine or fosphenytoin intravenous infusion, under cardiac monitoring.

Background Trigeminal neuralgia (TN) is a relatively rare condition which has a profound impact not only on the patient but also on those around them. There is no cure for TN, and the management of the condition is complex. The most effective forms of treatment are either through medication, neurosurgery, or combination of the two. Each option has risks and implications for the patient. As with all clinical decisions, it is important for patients to understand and be fully informed of the treatments available to them. A London UK unit adopted a joint-consultation clinic approach where the patient meets with both physician and neurosurgeon at the same time to discuss treatment options. The purpose of this evaluation is to understand patients’ level of satisfaction with the joint-consultation clinic and evaluate utilisation of a clinical decision-making tool. Method Patients who had attended the joint-consultation clinic over a period of 12 months were invited to participate in a telephone or paper survey (N = 55). Responses were analysed using descriptive statistics and thematic analysis. Results Forty-one patients (77% response rate) participated in the survey, and the results were overwhelmingly positive for the joint-consultation clinic regarding satisfaction. The benefits were broad ranging including increased understanding, collaboration and confidence in decision-making. Conclusions A joint-consultation clinic comprising a neurosurgeon and a physician for the treatment of TN is valued by patients who become better informed and able to make decisions about their care. Positive application of clinical decision-making aids in this situation offers potential across specialities.

Aim: Multiple sclerosis (MS) is well recognized as a secondary cause for trigeminal neuralgia (TN). In this case series, we detail the management of all the patients with TN and MS (pwTNMS) presenting to a specialist unit. Materials & methods: A prospective patient database was used to extract key clinical data on pharmacological, psychometric and surgical management of 20 pwTNMS. Results: 65% of pwTNMS underwent surgical interventions for management of their pain.12/20 achieved remission periods, through surgery and/or medication. Significant improvement was noted on the global impression of change illustrated by a p

Trigeminal neuralgia is one of the most severe facial pains that patients can experience. This unpredictable, episodic pain, mostly unilateral in the distribution of the trigeminal nerve, results in recurrent shooting pain lasting for seconds to minutes. It is light touch provoked and therefore prevents patients from eating and touching their face, and so has a significant impact on quality of life. Patients often consult a dentist because it usually presents like dental pain. Dentists need to avoid irreversible dental treatment. Response to carbamazepine is good but tolerability is poor. Surgical options are available and are generally successful. Patients can gain further information from a patient support group, such as Trigeminal Neuralgia Association UK. CPD/Clinical Relevance: Although rare, trigeminal neuralgia patients often present to dentists who therefore need to recognize it as a non-dental cause of pain in order to avoid irreversible dental treatment.

The diagnosis of a cranial neuralgia or neuropathy is clinical and rests on a detailed oral history. A working diagnosis can be obtained using eight yes-or-no questions. Clinical examination apart from sensory testing serves to rule out other facial pain conditions. Magnetic resonance imaging is essential as an aetiological investigation but requires use of specific imaging paradigms that allow visualization of the affected cranial nerve, surrounding blood vessels, and respective root entry zones to detect neurovascular compression. Only magnetic resonance imaging is capable of showing strategically placed brain lesions, such as multiple sclerosis plaques or solitary pontine lesions. Neurophysiological testing employing trigeminal reflexes reveals response abnormalities in practically all cases of secondary trigeminal neuralgia. As important as searching for a clinical diagnosis is assessment of the impact of the pain on the patient’s mood, functionality, and quality of life requires dedicated attention. Use of validated psychometric questionnaires will greatly facilitate this.

Background and Aims: Patients with trigeminal neuralgia (TN) can be overwhelmed with information they are given when first seen in a specialist secondary care clinic. The purpose of this study is to evaluate the extent to which a telephone service provided by the clinical nurse specialist (CNS) with independent prescribing rights improves patient management and satisfaction and reduces costs. Methods: All patients with a diagnosis of TN who used the CNS telephone service in 2015 were contacted by two medical students (independent observers) using a semi-structured questionnaire. Patients who could not be contacted were sent the same questionnaire and asked to return it by post. Results: Fifty-two patients were identified and 34 replied to a telephone call and 10 to a questionnaire, response rate 85%. Overall, 61% of patients rated their care outstanding or excellent. Four patients could not remember their consultation, others had used it on multiple occasions. Reasons for the consultation were pain management 50%, changeover of drugs 25%, advice about drug schedules 17%, and dealing with side effects 8%. The number of general practitioner (GP) consultations decreased as a result of this service. Patients suggested that the service should be available more than once a week. Conclusion: The CNS telephone service cut down on the number of outpatient appointments needed and reduced travel costs. Patients were appreciative that the CNS was in contact with GPs and this ensured prescriptions were filled in a timely manner and strengthen links with practices.

BackgroundTrigeminal 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.MethodsIn 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.ResultsOf 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.ConclusionsIn 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.

Orofacial pain is a complex problem and affects up to 7% of the population. Although trigeminal neuralgia has been considered the prime neuralgic condition in the facial region, other forms of neuropathic pain are now being more frequently recognized and require recognition and a different management approach. Many patients with chronic orofacial pain report numerous comorbidities, such as psychiatric or personality disorders, which significantly affect management. Various pain conditions present in the facial region. Some of them rarely present extra-orally (unless as radiating pain) such as atypical odontalgia or persistent dento-alveolar pain disorder and burning mouth syndrome, whereas others will present in both areas such as classical trigeminal neuralgia, post-traumatic trigeminal neuropathy, trigeminal neuropathy attributed to multiple sclerosis, and persistent idiopathic facial pain. Myofascial pain syndrome related to the muscles of mastication is very common and may also be associated with temporomandibular joint problems. Trigeminal neuralgia and the rarer glossopharyngeal neuralgia are similar in quality and characteristics with specific treatment modalities, but differ in pain location. Trigeminal neuropathic pain is caused most frequently by trauma. If no other diagnostic criteria are fulfilled, a diagnosis of persistent idiopathic facial pain is made. It is crucial for these patients to be managed by multidisciplinary teams.

Management strategies for the recurrence of trigeminal neuralgia after microvascular decompression include repeat procedures, medical management or no further therapy. No consensus exists as to which strategy is best for pain relief. The aim of this study was to determine the characteristics of patients with recurrences after microvascular decompression in the cohort, and to compare long-term pain relief between different management strategies.A historical cohort of patients who underwent microvascular decompression at a neurosurgical institution between 1982-2002, followed up by postal survey at five years, was included. Characteristics of patients who experienced a recurrence were compared to those who were recurrence free, and pain relief was compared between each management strategy.From 169 responders who were included in the study, 28 (16.6%) experienced a recurrence after MVD. No characteristics were significantly different between patients who experienced a recurrence and those who did not. Repeat procedures, including repeat microvascular decompression, partial sensory rhizotomy or radiofrequency thermocoagulation, yielded the highest proportion of pain relief after recurrence (p = 0.031), with 63.6% of patients pain-free at five-years. There was no evidence to suggest that the choice of repeat procedure influenced the likelihood of pain relief after recurrence. No further treatment yielded 57.1% pain-free, whereas medical therapy had the lowest proportion of pain-free patients, at 10.0%.A variety of options are available to patients for recurrence of TN after microvascular decompression with repeat procedures yielding the greatest likelihood of long-term pain relief in this historical cohort. The choice of management should consider the mechanism of recurrence, the benefits and risks of each option and the severity of the pain. Regardless of the management strategy selected, careful phenotyping of patients before and after surgery is paramount.

Tara Symonds,1 Jason A Randall,1 Deborah L Hoffman,2 Joanna M Zakrzewska,3 William Gehringer,4 John YK Lee5 1Clinical Outcomes Solutions, Clinical Outcome Assessments, Folkestone, UK; 2Biogen Inc., Cambridge, MA, USA; 3Eastman Dental Hospital – University College London Hospitals, Division of Diagnostic, Surgical and Medical Sciences, London, UK; 4Clinical Outcomes Solutions, Tucson, AZ, USA; 5University of Pennsylvania, Perelman School of Medicine, Philadelphia, PA, USA Background and objective: The Penn Facial Pain Scale (Penn-FPS) was originally developed as a supplemental module to the Brief Pain Inventory Pain Interference Index (BPI-PII) in order to fully assess the impact of trigeminal neuralgia (TN) pain on patients’ health-related quality of life (HRQoL). The current objective is to create and establish the content validity of a new stand-alone version of the measure, the Penn-FPS-Revised (Penn-FPS-R). Methods: Twenty participants (15 USA and 5 UK) with confirmed TN engaged in concept elicitation and cognitive debriefing interviews. These semi-structured interviews allowed participants to spontaneously describe the ways in which TN impacts on HRQoL and report on the extent to which the Penn-FPS and BPI-PII measure concepts are most relevant to them. Participants were also asked to report on the suitability of the instructions, recall period, and response options. Results: Concept elicitation revealed nine themes involving TN restrictions on daily activities and HRQoL, including: “talking,” “self-care,” “eating,” “eating hard foods/chewing foods,” “daily activities,” “activities with temperature change,” “touching,” “mood,” and “relationships.” Cognitive debriefing confirmed that all of the Penn-FPS concepts and some of the BPI-PII concepts (“mood,” “general activities,” and “relations with others”) were relevant, although some items required edits to better capture individuals’ experiences. The impact of temperature and/or weather on activities was also identified as an important concept that is not captured by the Penn-FPS or BPI-PII. Participants confirmed the acceptability of recall period, instructions, and response options. Results from the interviews were applied to create the Penn-FPS-R, a new brief outcome measure that assesses the impacts of TN most important to patients. Conclusion: The Penn-FPS-R is a new 12-item HRQoL outcome measure with content validity that can be used to assess and monitor the impact of TN treatment interventions in both clinical practice and research. Keywords: content validity, concept elicitation, cognitive debriefing, Penn Facial Pain Scale, trigeminal neuralgia, PRO development, patient reported outcome

Background and Objective Patients with trigeminal neuralgia (TN) and multiple sclerosis (MS) are often treated with medications or a surgical procedure. However, there is little evidence that such treatments result in 50% pain reduction and improvement in quality of life. The aim of this systematic review is to evaluate the clinical effectiveness of treatments in patients with MS and trigeminal neuralgia. Methods We searched Medline, EMBASE, and the Cochrane Collaboration database from inception until October 2016. Two authors independently selected studies for inclusions, data extraction, and bias assessment. Results All studies were of low quality using the GRADE (Grading of Recommendations Assessment, Development and Evaluation) system. For medical management, 10 studies were included, of which one was a randomized controlled trial. Two studies were on the use of misopropol, unique to patients with MS. For surgical therapy, 26 studies with at least 10 patients and a minimum of 2 years follow-up were included. All types of surgical procedures are reported and the results are poorer for TN with MS, with 50% having a recurrence by 2 years. The main complication was sensory loss. Many patients had to undergo further procedures to become pain free and there were no agreed prognostic factors. Conclusions There was insufficient evidence to support any 1 medical therapy and so earlier surgery may be preferable. A patient with TN and MS has therefore to make a decision based on low-level evidence, beginning with standard drug therapy and then choosing a surgical procedure.

Background: Side effects of anti‐epileptic drugs (AEDs) have not been adequately documented in trigeminal neuralgia and its variants. The aim of this observational cross‐sectional study was to compare the A‐B Neuropsychological Assessment Schedule (ABNAS), which measures cognitive side effects to the Adverse Events Profile (AEP), which looks at a broader range of side effects, and to investigate drug/dosage relationships with questionnaire scores to help determine a point at which a drug change would be indicated. / Methods: One hundred five patients were recruited from a facial pain clinic, over a 10‐month period. Self‐complete questionnaire scores were compared between patients using different AEDs. / Results: A‐B Neuropsychological Assessment Schedule score correlated well with AEP indicating that cognitive side effects were a significant burden. Toxic range on the ABNAS was estimated to occur when scores were >43/72 (95% CI: 37.4‐48.6). Polytherapy is weakly associated with the higher scores. Oxcarbazepine dosage was found to linearly correlate with AEP and ABNAS scores, better than carbamazepine dosage. Memory alteration was least common with lamotrigine and oxcarbazepine, and there was less association between fatigues with oxcarbazepine/pregabalin. / Conclusion: Anti‐epileptic drugs have significant side effects. The ABNAS questionnaire is a useful tool along with the AEP to recognize and monitor AEDs’ side effects and to help to adjust medications to optimal dosage.

Background Microvascular decompression (MVD) and partial sensory rhizotomy (PSR) provide longstanding pain relief in trigeminal neuralgia (TN). Given their invasiveness, complications can result from such posterior fossa procedures, but the impact of these procedures and their complications on patient-reported outcome measures (PROM), such as quality of life and distress, are not well established. Method Five years after surgery, patients who underwent first MVD or PSR for TN at one institution, between 1982 and 2002, were sent a self-completion assessment set containing a range of PROMs: the Short Form-12 (SF-12) questionnaire to assess quality of life, the Hospital Anxiety and Depression Scale (HADS) to assess distress, and a questionnaire containing questions about postoperative complications, their severity and impact on quality of life. These findings and demographic data were compared between MVD and PSR. Results One hundred and eighty-one of 245 (73.9%) patients after first MVD and 49 of 60 (81.7%) after PSR responded, and were included in analyses. The mean SF-12 scores of patients after MVD and PSR at five-year follow-up were significantly lower than English age-matched norms. Though there were no differences in SF-12 physical or mental component scores between the two procedures, patients after PSR were more likely to have case-level anxiety (RR = 3.3; 95% CI, 1.1–10.5; p = 0.03), had more postoperative complications, and of greater severity, including pain (RR = 2.52; 95% CI, 1.5–4.1; p

Premise Facial pain refers to a heterogeneous group of clinically and etiologically different conditions with the common clinical feature of pain in the facial area. Among these conditions, trigeminal neuralgia (TN), persistent idiopathic facial pain, temporomandibular joint pain, and trigeminal autonomic cephalalgias (TAC) are the most well described conditions. Conclusion TN has been known for centuries, and is recognised by its characteristic and almost pathognomonic clinical features. The other facial pain conditions are less well defined, and over the years there has been confusion about their classification.

Background Trigeminal neuralgia (TN) can have a significant impact on wellbeing and quality of life. Limited data exist for treatments that improve TN pain acutely, within 24 h of administration. This systematic review aims to identify effective treatments that acutely relieve TN exacerbations. Methods We searched Medline and Cochrane Central Register of Controlled Trials (CENTRAL) for relevant English language publications. The reference list for all articles was searched for other relevant publications. All studies that satisfied the following PICO criteria were included: (i) Population—adults with acute exacerbation of primary TN symptoms; (ii) Intervention—any medication or intervention with the primary goal of pain relief within 24 h; (iii) Comparator—usual medical care, placebo, sham or active treatment; (iv) Outcome—more than 50% reduction in pain intensity within 24 h of administration. Results Of 431 studies, 17 studies were identified that reported immediate results of acute treatment in TN. The evidence suggests that the following interventions may be beneficial: local anaesthetic, mainly lidocaine (ophthalmic, nasal or oral mucosa, trigger point injection, i.v. infusion, nerve block); anticonvulsant, phenytoin or fosphenytoin (i.v. infusion); serotonin agonist, sumatriptan (s.c. injection, nasal). Other referenced interventions with very limited evidence include N-methyl-d-aspartate receptor antagonist (magnesium sulphate infusion) and botulinum toxin (trigger point injection). Conclusions Several treatment options exist that may provide fast and safe relief of TN. Future studies should report on outcomes within 24 h to improve knowledge of the acute analgesic TN treatments.

Aims To investigate how photographic images (Pain Cards) co-created by an artist and chronic pain patients could be used in groups of patients with burning mouth syndrome to facilitate characterization of their pain and its impact on quality of life. Methods Ten groups of patients with burning mouth syndrome attending a 2.5-hour information session in a facial pain unit were presented with 54 Pain Cards put in a random order on a table. They were asked to pick one card that described the quality of their pain and one that reflected the impact of the pain on their lives. The total number of patients was 119 (divided into groups of 8 to 14) over a 4-year period. Results A total of 114 patients chose a Pain Card; 24 cards (chosen a total of 73 times) were used to phenotype the pain and 39 cards (chosen a total of 127 times) were used to describe the impact of the pain. The most frequently used Pain Card (13 times) was a pair of lips closed with a clothes peg, whereas the other most frequently selected images were black and white. The choice of Pain Card and words used to explain the choice implied a neuropathic type of pain. Themes that were common included those of isolation, loss of confidence, low mood, and decrease in activities and socialization. Conclusion The Pain Cards chosen and the main themes support those found in the literature on BMS. The Pain Cards may help pain sufferers gain more empathy and support due to improved understanding by their health care providers.

Persistent or chronic idiopathic facial pain, often called atypical facial pain, is often used as a diagnosis of exclusion. It is chronic pain in a nonanatomically distributed area of the face and mouth that can be episodic or continuous and described as a nagging dull pain that at times is severe. It is associated with other chronic pain conditions, psychological abnormalities, and significant life events. Investigations are all normal and early treatment can prevent chronicity. A multidisciplinary biopsychosocial approach with the use of antidepressants and cognitive behavior therapy provides the best chance of pain relief and improved quality of life.

Key points: 1. There is no high quality comparative effectiveness research for surgery versus pharmacological management or for different surgical techniques. 2. High quality evidence (randomised controlled trials) is required to inform routine decision making for patients with TN and their consultants. 3. The design and conduct of surgery trials using the standard design has numerous challenges (patient preferences, clinician preferences, clinically meaningful outcome measures, learning curves for surgical techniques, irreversibility of results). 4. The ‘cohort multiple RCT’ design is an innovative alternative design that provides both long term observational data and a facility for quick and efficient conduct of multiple trials. Unlike standard trials, patient information and consent replicate that found in routine healthcare wherever possible. 5. Embedding multiple trials within a cohort of patients with a diagnosis of TN would enable the quick and efficient identification and recruitment of patients to trials of a variety of interventions, and help provide the information that patients and clinicians require.

AIM: To assess the quality of referral letters to a facial pain service and highlight the key requirements of such letters. METHOD: The source of all referral letters to the service for five years was established. For one year the information provided in 94 referrals was assessed. Using a predetermined checklist of essential information the referral letters were compared to these set criteria. RESULTS: The service received 7,001 referrals and, on average, general dental practitioners (GDPs) referred 303 more patients per year than general medical practitioners (GMPs). Seventy-one percent of all referrals were from primary care practitioners, the rest were from specialists. Over 70% of GMP and 52% of GDP letters included a past medical history, with GMPs more likely to suggest a possible diagnosis and include previous secondary care referrals. The mean score for GMP referrals compared to the standard proforma (maximum of 12) was 5.6 and for GDP referrals 5.0. A relevant drug history was included by 75.6% GMP compared to 38.7% of GDPs. GMPs were more likely to include any relevant mental health history. CONCLUSIONS: The overall quality of referral letters is low which makes it difficult for the specialists to provide robust treatment plans.

BACKGROUND: Trigeminal neuralgia (TN) is an extremely painful condition, which can be difficult to diagnose and treat. In Europe, TN-patients are managed by many different specialities. Therefore, there is a great need for comprehensive European guidelines for management of TN. The European Academy of Neurology asked an expert panel to develop recommendations for a series of questions that are essential for daily clinical management of patients with TN.METHODS: We performed a systematic review of the literature and developed recommendations based on GRADE, where feasible, if not a good practice statement was given.RESULTS: We recommend the use of the most recent classification system, which diagnoses TN as primary TN, either classical or idiopathic depending on the degree of neurovascular contact, or as secondary TN caused by pathology other than neurovascular contact. An MRI, using a combination of three high-resolution sequences, should be performed as part of work up in TN patients, because no clinical characteristics can exclude secondary TN. If MRI is not possible, trigeminal reflexes can be used. Neurovascular contact plays an important role in primary TN, but demonstration of a neurovascular contact should not be used to confirm the diagnosis of TN. Rather, it may help to decide if and when a patient should be referred for microvascular decompression. In acute exacerbations of pain, intravenous infusion of fosphenytoin or lidocaine can be used. For long-term treatment we recommend carbamazepine or oxcarbazepine as drugs of first choice. Lamotrigine, gabapentin, botolinum toxin type A, pregabalin, baclofen and phenytoin may be used either alone or as add-on therapy. We recommend that patients should be offered surgery if pain is not sufficiently controlled medically or if medical treatment is poorly tolerated. Microvascular decompression is recommended as first-line surgery in patients with classical TN. No recommendation can be given for choice between any neuroablative treatments or between them and microvascular decompression in patients with idiopathic TN. Neuroablative treatments should be the preferred choice if MRI does not demonstrate any neurovascular contact. Treatment for patients with secondary TN should in general follow the same principles as for primary TN. In addition to medical and surgical management, we recommend that patients are offered psychological and nursing support.CONCLUSIONS: Compared with previous TN guidelines, there are important changes regarding diagnosis and imaging. These allow better characterization of patients and help in decision making regarding the planning of medical and surgical management. Recommendations on pharmacological and surgical management have been updated. There is a great need for future research on all aspects of TN, including pathophysiology and management. This article is protected by copyright. All rights reserved.

Objectives The commonest secondary cause for trigeminal neuralgia (TN) is multiple sclerosis (MS) and little is known about this group of patients in terms of their presentation and treatments. We compared patients with TN and MS (pwTNMS) with a cohort of patients with primary TN, who had been referred to the same specialist unit, both in terms of characteristics and impact on quality of life at the time of their first assessment. Methods Using a prospective patient database we extracted key clinical data and results from psychometrically tested questionnaires of 26 pwTNMS and compared them to an age and gender-matched set of 68 patients with primary TN. Results Our findings suggest that pwTNMS exhibit a more severe clinical phenotype than primary TN. Prior to referral, pwTNMS are more likely to have used more healthcare services and undergone more neurosurgical interventions. Strikingly, pwTNMS exhibit reduced lengths and duration of remission periods and fewer identifiable triggers. Furthermore, pwTNMS report significant impact on quality of life comparable to those in primary TN, scoring highly in measures of anxiety, depression, and catastrophizing, but also report greater sleep disturbance, and overall interference in activities of daily living. Conclusions pwTNMS have a more intractable TN, one which may necessitate a more complex approach to treatment, earlier referral to secondary care and an extensive assessment of mental health. Quality of life in pwTNMS is severely affected by both their MS and their TN, suggesting management should occur in specialist centres with access to a multidisciplinary team.

Background: Trigeminal neuralgia (TN) is a painful disorder characterized by sudden electric shock–like pain. It is a rare condition for which multiple treatments are available, including medical and surgical. The best treatment option is yet to be defined, and this is related to the lack of definition in the treatment outcomes and outcome measures. The aim of this systematic review was to summarize all the outcomes and outcomes measures that have been published to date and highlight variability in their use. Methods: We have conducted a literature search using a wide range of databases (1946–2019 for medical and 2008–2019 for surgical treatment), for all intervention studies in TN. Four hundred and sixty-seven studies were selected for data extraction on TN classification, data collection method, intervention, and treatment outcomes mapped to the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT guidelines). Results: Most studies collected data on pain (n = 459) and side effects (n = 386) domains; however, very few collected data on the impact of treatment on physical (n = 46) and emotional functioning (n = 17) and on patient satisfaction (n = 35). There was high variability on outcome measures used for pain relief (n = 10), pain intensity (n = 9), and frequency of pain episodes (n = 3). Conclusions: A clear definition of what are the important outcomes for patients with TN is essential. The choice of standardized outcome measures allowing for consistent reporting in TN treatment will allow for comparison of studies and facilitate treatment choice for patients and clinicians thus, improving health outcomes and reducing health care cost. Key words: Outcome measures, Systematic review, Treatment outcomes, Trigeminal neuralgia

The management of orofacial pain is considered to be within the remit of oral and maxillofacial surgery (OMFS). In this study we aimed to provide an overview of the healthcare "journey" of a group of patients referred to a specialist unit with "complex" non-temporomandibular orofacial pain. We retrospectively reviewed all those who were referred over a six-month period and followed for up to three years. A total of 133 were included, 69% were female, and the mean (SD) duration of symptoms before assessment was 66.4 (88.8) months. Patients were treated for seven different conditions by a mean (SD) of 2.6 (1.2) specialties, and 3.2 (2.5) medications had been tried before assessment at the unit. A mean (SD) of 3.9 (3.3) appointments were attended over the three years, and 80% of patients were prescribed at least one medication. Patients were under the care of the unit for a mean (SD) of 11.9 (14.0) months, and 38% were still being seen at three years. Those with trigeminal neuralgia were most likely to remain in care at three years (p=

Trigeminal neuralgia (TN) is a rare orofacial disorder characterized by severe unilateral paroxysmal pain in the region of the fifth cranial nerve. Clinical guidelines recommend carbamazepine (only US Food and Drug Administration–approved drug for TN) and oxcarbazepine as first-line therapies. We utilized the US Truven Health MarketScan® database to examine treatment patterns among patients with TN. Included patients were aged ≥18 years, newly diagnosed with TN (≥2 TN diagnoses ≥14 days apart; no diagnosis in the prior year), continuously enrolled 1 year pre-index, with ≥3 years’ follow-up post-index. We assessed utilization of selected pharmacotherapies (carbamazepine, oxcarbazepine, pregabalin, gabapentin, baclofen, duloxetine, topiramate), surgery (posterior fossa, radiosurgery), and injections (peripheral anesthetic injections, Gasserian ganglion procedures) for TN. 3685 patients were included (2425 commercial, 1260 Medicare; 71.8% female; mean[SD] age, 59 [15] years). Overall, 72.5% of patients received at least 1 studied medication, most commonly carbamazepine (51.7%) or gabapentin (48.6%). Sixty-five percent of pharmacologically treated patients had ≥2 treatment episodes; 41.6% had ≥3 (defined by a change in pharmacotherapy [monotherapy/combination] regimen). Overall, 12.3% had surgery and 7.3% injections; 42.9% received opioids for TN. In the 3 years after diagnosis, patients with TN in the United States receive a variety of pharmacological treatments, including opioids, despite carbamazepine being the only approved medication. A notable proportion utilize surgeries/injections. A high proportion of pharmacologically treated patients receive multiple treatment episodes, suggesting frequent therapy switching, perhaps due to suboptimal efficacy/tolerability. Our data suggest a high burden of illness associated with TN. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially. http://creativecommons.org/licenses/by-nc-nd/4.0.

Background Trigeminal neuralgia (TN) is a serious health problem, causing brief, recurrent episodes of stabbing or burning facial pain, which patients describe as feeling like an electric shock. The consequences of living with the condition are severe. There is currently no cure for TN and management of the condition can be complex, often delayed by misdiagnosis. Patients’ qualitative experiential accounts of TN have not been reported in the literature. Capturing subjective experiences can be used to inform the impact of the condition on quality of life and may contribute to a better understanding of current clinical practice with the aim of improving patient care. Methods Participants with TN (n = 16; 11 female), including those who have and have not undergone surgical intervention(s), took part in one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts. Results The impact of TN and treatment on the lives of participants emerged as four predominant themes: (1) diagnosis and support with TN, (2) living in fear of TN pain, (3) isolation and social withdrawal, and (4) medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts. Conclusions Key issues to address in the management of patients with TN include continued delays in diagnosis, persistent side effects from medication, and a lack of psychological support. Developing strategies to enhance the management of patients with TN, informed by a biopsychosocial approach and multidisciplinary team working, is essential to enhancing the provision of current care.

BACKGROUND: This study aimed to describe recruitment challenges encountered during a phase IIa study of vixotrigine, a state and use-dependent Nav1.7 channel blocker, in individuals with trigeminal neuralgia.METHODS: This was an international, multicenter, placebo-controlled, randomized withdrawal study that included a 7-day run-in period, a 21-day open-label phase, and a 28-day double-blind phase in which patients (planned n = 30) were randomized to vixotrigine or placebo. Before recruitment, all antiepileptic drugs had to be stopped, except for gabapentin or pregabalin. After the trial, patients returned to their original medications. Patient recruitment was expanded beyond the original five planned (core) centers in order to meet target enrollment (total recruiting sites N = 25). Core sites contributed data related to patient identification for study participation (prescreening data). Data related to screening failures and study withdrawal were also analyzed using descriptive statistics.RESULTS: Approximately half (322/636; 50.6%) of the patients who were prescreened at core sites were considered eligible for the study and 56/322 (17.4%) were screened. Of those considered eligible, 26/322 (8.1%) enrolled in the study and 6/322 (1.9%) completed the study. In total, 125 patients were screened across all study sites and 67/125 (53.6%) were enrolled. At prescreening, reasons for noneligibility varied by site and were most commonly diagnosis change (78/314; 24.8%), age > 80 years (75/314; 23.9%), language/distance/mobility (61/314; 19.4%), and noncardiac medical problems (53/314; 16.9%). At screening, frequently cited reasons for noneligibility included failure based on electrocardiogram, insufficient pain, and diagnosis change.CONCLUSIONS: Factors contributing to recruitment challenges encountered in this study included diagnosis changes, anxiety over treatment changes, and issues relating to distance, language, and mobility. Wherever possible, future studies should be designed to address these challenges.TRIAL REGISTRATION: ClinicalTrials.gov, NCT01540630 . EudraCT, 2010-023963-16. 07 Aug 2015.

Communication and expression of pain can be challenging for patients experiencing chronic pain. However, an open dialogue and expression of pain during consultations with doctors is beneficial to both the clinician and the patient. The authors of this article implemented the use of a series of visual representations of pain, previously co-created by the first author (an artist) and individuals experiencing chronic pain, during chronic pain consultations at their facility in London, United Kingdom. Both clinicians and patients were asked to comment on their satisfaction with the consultation, and these results were compared with those of a group of patients at the clinic who did not view the images., BACKGROUND: Visual images may facilitate the communication of pain during consultations. OBJECTIVES: To assess whether photographic images of pain enrich the content and/or process of pain consultation by comparing patients’ and clinicians’ ratings of the consultation experience. METHODS: Photographic images of pain previously co-created by patients with a photographer were provided to new patients attending pain clinic consultations. Seventeen patients selected and used images that best expressed their pain and were compared with 21 patients who were not shown images. Ten clinicians conducted assessments in each condition. After consultation, patients and clinicians completed ratings of aspects of communication and, when images were used, how they influenced the consultation. RESULTS: The majority of both patients and clinicians reported that images enhanced the consultation. Ratings of communication were generally high, with no differences between those with and without images (with the exception of confidence in treatment plan, which was rated more highly in the image group). However, patients’ and clinicians’ ratings of communication were inversely related only in consultations with images. Methodological shortcomings may underlie the present findings of no difference. It is also possible that using images raised patients’ and clinicians’ expectations and encouraged emotional disclosure, in response to which clinicians were dissatisfied with their performance. CONCLUSIONS: Using images in clinical encounters did not have a negative impact on the consultation, nor did it improve communication or satisfaction. These findings will inform future analysis of behaviour in the video-recorded consultations.

Pain is common and difficult to communicate or reduce into the verbal or numerical scales commonly used in clinical practice. This chapter explores the specificities of the photographic medium demonstrating that visual images (in particular photographs) can be alternative vehicles for eliciting language and narrative capable of expanding and improving communication and clinician-patient interaction within medical pain consultations. The chapter focuses on a fine art/medical collaborative project, face2face, at a leading London teaching Hospital, which co-created images of pain with pain sufferers and piloted a selection of these in the clinics of ten experts. Giving examples of images from the project as patients progressed through their management, we report early research findings suggesting that the verbal language is enriched and the non-verbal interaction impacted on.