Papers by Joanna M Zakrzewska
BMJ, Mar 12, 2015
After odontogenic pain, temporomandibular disorders (TMDs) are one of the most common causes of p... more After odontogenic pain, temporomandibular disorders (TMDs) are one of the most common causes of pain in the mouth and face and also have the potential to produce persisting (chronic) pain. 1 2 Chronic or persistent (myogenous) TMDs can be associated with other chronic pain conditions, 3 including migraine, fibromyalgia, and widespread pain. 4-8 They are also known to be comorbid with bruxism, depression, irritable bowel syndrome, and chronic fatigue. 6 9 10 With or without these comorbidities, TMDs are recognised to have a considerable impact on quality of life. 11-17 Early diagnosis and explanation followed by management is likely to be key to improving prognosis and reducing the impact of this group of conditions on quality of life. 11 18 The purpose of this review is to give non-specialists an overview of the diagnosis and management of TMDs.
European Journal of Neurology, Apr 8, 2019
With positive results, EAN recommends accreditation of 1 hour of CME, which may be claimed with t... more With positive results, EAN recommends accreditation of 1 hour of CME, which may be claimed with the national body in charge of CME accreditation.

Journal of Pain Research, Jul 1, 2020
Purpose: Vixotrigine (BIIB074) is a voltage-and use-dependent sodium channel blocker. These studi... more Purpose: Vixotrigine (BIIB074) is a voltage-and use-dependent sodium channel blocker. These studies will evaluate the efficacy and safety of vixotrigine in treating pain experienced by patients with trigeminal neuralgia (TN) using enriched enrollment randomized withdrawal trial designs. Patients and Methods: Two double-blind randomized withdrawal studies are planned to evaluate the efficacy and safety of vixotrigine compared with placebo in participants with TN (NCT03070132 and NCT03637387). Participant criteria include ≥18 years old who have classical, purely paroxysmal TN diagnosed ≥3 months prior to study entry, who experience ≥3 paroxysms of pain/day. The two studies will include a screening period, 7-day run-in period, a 4-or 6-week single-dose-blind dose-optimization period (Study 1) or 4-week openlabel period (Study 2), and 14-week double-blind period. Participants will receive vixotrigine 150 mg orally three times daily in the dose-optimization and open-label periods. The primary endpoint of both studies is the proportion of participants classified as responders at Week 12 of the double-blind period. Secondary endpoints include safety measures, quality of life, and evaluation of vixotrigine population pharmacokinetics. Conclusion: There is a need for an effective, well-tolerated, noninvasive treatment for the neuropathic pain associated with TN. The proposed studies will evaluate the efficacy and safety of vixotrigine in treating pain experienced by patients with TN.

Journal of Oral & Facial Pain and Headache
Aims: To understand, from the patient perspective, the meaning of living with trigeminal neuralgi... more Aims: To understand, from the patient perspective, the meaning of living with trigeminal neuralgia (TN) and what the patient-desired outcomes of treatment are. Methods: A qualitative study involving focus group work with 14 participants with a diagnosis of TN was conducted. The discussions were recorded and transcribed verbatim and analyzed using framework analysis. Results: Four themes and 14 subthemes were identified. Theme 1 reflects the uncertainty about TN etiology and prognosis; theme 2 includes descriptions of the mental, social, and physical impacts of TN that contrast with coping mechanisms developed over time; theme 3 reflects participants' views of what a successful treatment means and the specific outcomes they expect following treatment, as well as patient willingness to self-manage their conditions while supported; and theme 4 highlights the importance of appropriate and timely access to health care and the importance of peer support. Conclusion: This study confirms the need to move beyond the biologic models of disease to patient-centered care and research approaches.

European Journal of Pain
BackgroundTrigeminal neuralgia (TN) is an excruciating unilateral facial pain, which negatively a... more BackgroundTrigeminal 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).MethodsA 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 by <15% were retained, and those for which no consensus was reached were discussed at a consensus meeting.ResultsOf the 70...

The Journal of Headache and Pain, 2020
Background Trigeminal neuralgia (TN) is an orofacial condition defined by reoccurring, spontaneou... more Background Trigeminal neuralgia (TN) is an orofacial condition defined by reoccurring, spontaneous, short-lived but excruciating stabbing pain. Pharmacological interventions constitute the first-line treatment for TN, with antiepileptic drugs commonly prescribed. People treated for TN pain with antiepileptic drugs describe cognitive and motor difficulties affecting activities of daily living, and report poorer quality of life. We undertook the first comprehensive objective evaluation of sensorimotor and cognitive performance in participants being treated for TN pain with antiepileptic drugs relative to age-matched controls. Methods Participants (43 TN, 41 control) completed a battery of sensorimotor (steering, aiming and tracking) and cognitive (working memory, processing speed, inhibition) tasks. Results The TN group performed significantly worse than controls on the sensorimotor tracking and aiming tasks and across all cognitive measures. Conclusions The data explain why patients ...

Dental Update, 2019
Trigeminal neuralgia is one of the most severe facial pains that patients can experience. This un... more 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.

Trials, 2018
Background: This study aimed to describe recruitment challenges encountered during a phase IIa st... more 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.

Journal of pain research, 2018
The Penn Facial Pain Scale (Penn-FPS) was originally developed as a supplemental module to the Br... more 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). 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. Concept elicitation revealed nine themes involving TN restrictions on daily activities and HRQoL, including: ...

Acta neurochirurgica, 2018
Microvascular decompression (MVD) and partial sensory rhizotomy (PSR) provide longstanding pain r... more 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. 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. One hundred and eighty-one of 245 (73.9%) patients after first MVD and 49 of 60 (81.7%) af...

The journal of headache and pain, 2015
Adverse effects of drugs are poorly reported in the literature . The aim of this study was to exa... more Adverse effects of drugs are poorly reported in the literature . The aim of this study was to examine the frequency of the adverse events of antiepileptic drugs (AEDs), in particular carbamazepine (CBZ) and oxcarbazepine (OXC) in patients with neuralgiform pain using the psychometrically tested Liverpool Adverse Events Profile (AEP) and provide clinicians with guidance as to when to change management. The study was conducted as a clinical prospective observational exploratory survey of 161 patients with idiopathic trigeminal neuralgia and its variants of whom 79 were on montherapy who attended a specialist clinic in a London teaching hospital over a period of 2 years. At each consultation they completed the AEP questionnaire which provides scores of 19-76 with toxic levels being considered as scores >45. The most common significant side effects were: tiredness 31.3 %, sleepiness 18.2 %, memory problems 22.7 %, disturbed sleep 14.1 %, difficulty concentrating and unsteadiness 11.6...

BMJ clinical evidence, 2009
Trigeminal neuralgia is a sudden, unilateral, brief, stabbing, recurrent pain in the distribution... more Trigeminal neuralgia is a sudden, unilateral, brief, stabbing, recurrent pain in the distribution of one or more branches of the fifth cranial nerve. Pain occurs in paroxysms which last from a few seconds to 2 minutes. The frequency of the paroxysms ranges from a few to hundreds of attacks a day. Periods of remission can last for months to years, but tend to shorten over time. We conducted a systematic review and aimed to answer the following clinical question: What are the effects of treatments in people with trigeminal neuralgia? We searched: Medline, Embase, The Cochrane Library, and other important databases up to September 2007 (Clinical Evidence reviews are updated periodically, please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). We found 14 systematic reviews, RCTs, or observational ...
BMJ (Clinical research ed.), Jan 12, 2015
This leaflet has been written by a European team who belong to EFIC, a multidisciplinary professi... more This leaflet has been written by a European team who belong to EFIC, a multidisciplinary professional organisation who are involved in pain management and pain research.

Journal of oral & facial pain and headache, 2014
To explore patients' understanding of their orofacial pain, as this is an under-researched ar... more To explore patients' understanding of their orofacial pain, as this is an under-researched area despite emerging as a common aim of consultation. Twelve people with chronic orofacial pain were interviewed shortly before their first consultation at a specialist facial pain clinic about their understanding of their pain, and they completed self-report measures of distress and pain interference. A day after the consultation, they wrote a short letter about how they now understood their pain and were then interviewed by phone. All accounts were analyzed using thematic analysis. Four themes emerged across preconsultation and postconsultation data: the need for information to counteract helplessness; worry as part of making sense of pain; validation of the pain experience (all predominant preconsultation); and the importance of trust (reflecting changes in understanding since consultation). Most patients changed their understanding of pain and resolved their worries to some extent, an...

BMJ, 2014
Trigeminal neuralgia is a severe, unilateral, episodic pain of the face that is provoked by light... more Trigeminal neuralgia is a severe, unilateral, episodic pain of the face that is provoked by light touch; it should be differentiated from dental causes of pain Magnetic resonance imaging (MRI) can distinguish between patients having secondary trigeminal neuralgia related to tumours and that related to multiple sclerosis The first line drug for treatment is either carbamazepine or oxcarbazepine, and doses should be slowly escalated. Neurosurgical options should be discussed at an early stage, but surgery may not be required until quality of life is compromised Microvascular decompression is a major neurosurgical procedure that provides the longest period of pain relief and aims to preserve function of the nerve Percutaneous, palliative destructive procedures and stereotactic radiosurgery can provide temporary relief, but at the risk of facial numbness, which increases with repetition of the procedure Sources and selection criteria We used Medline and Embase and the search terms "trigeminal neuralgia" and "tic doloureux." One author (JZ) has done Cochrane reviews on both medical and surgical outcomes for trigeminal neuralgia, and the search strategy is shown in those publications. We searched the Cochrane Neuromuscular Disease Group specialised register, Cochrane Library, Medline, and Embase using the search terms "trigeminal neuralgia/facial neuralgia/tic douloureux," "tic doloureux," "tic doloreux," or "tic douloreux" with no language exclusion. Clinical knowledge summaries and international guidelines for trigeminal neuralgia were published in 2008, and the search strategy can be found on www.aan. com. We also used our own extensive archives of references.

Pain, 2007
Trigeminal neuralgia (TN) is a rare form of neuropathic facial pain characterised by severe, paro... more Trigeminal neuralgia (TN) is a rare form of neuropathic facial pain characterised by severe, paroxysmal pains in the face. Little is known about the decision process in treatment of TN, and management with anti-epileptic drugs or surgical procedures carries risks of side effects, recurrence and complications. One hundred fifty-six previously diagnosed TN patients completed an adapted timetrade-off utility measurement questionnaire to ascertain how they valued the potential outcomes from various surgical and medical treatments. The decision analysis revealed that microvascular decompression surgery (MVD) offered the best chance of improved quality of life or highest maximum expected utility (MEU). MVD (MEU = 16.08 out of a possible 20) was closely followed by balloon compression (MEU = 15.97), percutaneous glycerol rhizolysis (MEU = 15.61) and then radiofrequency thermocoagulation (MEU = 14.93). Medication offered the least optimal chance of improved quality of life (MEU = 14.61). The difference between the highest (MVD) and lowest scoring treatments (medication) was 7.3% (1.46/20). These results were sensitive to some utility values, meaning the preferred treatment is changed by the values patients assign to outcomes. As surgical techniques narrowly offer the highest chance of maximising patient quality of life, all patients with TN should consider surgery. However, surgery is not right for everyone, and patients should be informed about their full range of choices. Treatment decisions must take place after careful consideration of the values patients place on benefits and risks of treatment.

Neurosurgery, 2003
OBJECTIVE There are numerous reports on the surgical treatment of trigeminal neuralgia, but the s... more OBJECTIVE There are numerous reports on the surgical treatment of trigeminal neuralgia, but the studies do not use uniform outcome measures, which makes it difficult for patients and clinicians to determine which treatment may be most appropriate. The objectives of this study were to set quality criteria and standards for outcome reporting for the surgical treatment of trigeminal neuralgia (on the basis of international expert opinion), to identify and assess all studies of the surgical treatment of trigeminal neuralgia and evaluate the studies against those criteria, and to provide recommendations for submitting reports on the outcomes of surgical treatment of trigeminal neuralgia. METHODS The types of data that 11 neurosurgeons and 2 neurologists considered essential for articles reporting the outcomes of surgical treatment of trigeminal neuralgia were the quality criteria used by the two authors. Standards were established in terms of the minimal number and type of criteria that ...

Journal of Pain Research, 2013
An expert group of 40 pain specialists from 16 countries performed a first assessment of the valu... more An expert group of 40 pain specialists from 16 countries performed a first assessment of the value of predictors for treatment success with 5% lidocaine-medicated plaster in the management of cancer pain with neuropathic components and trigeminal neuropathic pain. Results were based on the retrospective analysis of 68 case reports (sent in by participants in the 4 weeks prior to the conference) and the practical experience of the experts. Lidocaine plaster treatment was mostly successful for surgery or chemotherapy-related cancer pain with neuropathic components. A dose reduction of systemic pain treatment was observed in at least 50% of all cancer pain patients using the plaster as adjunct treatment; the presence of allodynia, hyperalgesia or pain quality provided a potential but not definitively clear indication of treatment success. In trigeminal neuropathic pain, continuous pain, severe allodynia, hyperalgesia, or postherpetic neuralgia or trauma as the cause of orofacial neuropathic pain were perceived as potential predictors of treatment success with lidocaine plaster. In conclusion, these findings provide a first assessment of the likelihood of treatment benefits with 5% lidocaine-medicated plaster in the management of cancer pain with neuropathic components and trigeminal neuropathic pain and support conducting large, well-designed multicenter studies.
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Papers by Joanna M Zakrzewska