bluuebunny/crossref_metadata_2025_split huggingface dataset:
15 The neurological patient experience survey (England)
Authors: Dilley Michael , McIntosh Katharine , Vibert Sarah ,   on behalf of The Neurological Alliance
Published: July 2020

Objectives/aimsThe Neurological Alliance’s patient experience survey 2018/19 aimed to gather relevant data of the experiences of 10,000 neurology patients across England, in order to reveal how patients are faring, and to provide insight about the impact service provision (or lack thereof) is having in people’s lives. It is the only pan- neurological national survey of neurology patients. Mental wellbeing questions were included to build our understanding of service provision and whether people’s needs are being met.MethodsAn online and in-clinic survey was conducted during the course of 2018–2019. The online survey was promoted by The Neurological Alliance’s member organisations (predominantly charities), and via social media. The in-clinic data was collected from patients attending neurology outpatient appointments at 39 clinics across England. The data underwent a rigorous cleaning process. Data regarding patient’s home postcodes was collected in order to be able to attribute responses to STPs. Results were subsequently anonymised prior to analysis.ResultsOf those to whom these questions were relevant:40% of respondents (n=2879) felt their mental wellbeing needs were not being met at all, and an additional 22% (n=1613) said their needs were only being met to a small extent 30% (n=2821) had not been referred or signposted to support for their mental wellbeing by a health professional, but would have liked this 58% (n=5593) said they were not asked about their mental wellbeing by a health or social care professional.Of those referred/signposted for mental health support, 26% (n=616) were referred to a neuropsychologist/neuropsychiatrist, 60% (n=1452) to a counsellor/therapist, 7% (n=167) to a buddying/befriending support group 62% (n=1249) said this support helped them feel better/more positive; 24% (n=481) said that this support did not make them feel better/more positive; 14% (n=270) said it was not suitable for them.The older respondents were, the less likely they were to have been signposted to support for managing their mental health: 18–24s scored 36%, 55–64s scored 26%, 65–74s scored 17%, and 75+ scored 12%. People aged 75+ were most likely (67%) to report they did not need/want signposting.ConclusionsThe data gathered enhances our understanding of the mental wellbeing of people with neurological conditions, and provides a baseline for monitoring improvement/future interventions, such as the forthcoming neuropsychiatry service specification.
16 Outcomes of a novel 5-week individualized multidisciplinary outpatient (day-patient) treatment programme for functional (psychogenic) neurological symptoms
Authors: Petrochilos P , Elmalem M , Selai C , Patel D , Hayward K , Ranu J , Louissaint H 
Published: July 2020

AimWe report the results of a novel 5-week treatment programme, delivered by a multi-disciplinary team, with individualised sessions to treat functional neurological symptoms in a neuropsychiatric outpatient setting. The primary aims of this MDT programme were to (a) reduce symptoms (b) improve health and social functioning (c) improve functional performance (d) improve health status.MethodTreatment involved individual sessions of neuropsychiatry, cognitive behavioural therapy, physiotherapy, occupational therapy, education and family meetings. Outcome measures were collected at the beginning and end of treatment and at a 6 month face to face follow-up. These were both patient and clinician reported. The aims were assessed by the following measures: symptom reduction (PHQ15, PHQ9, GAD7, SPIN, Rosenberg, CGI); health and social functioning (HONOS, WSAS); functional performance (COPM); and improvements in health status (EQ5DL). Results: Analyses were conducted on 78 patients who started and completed the programme and attended a 6 month face to face review. There were high baseline levels of disability compared to EQ5DL population norms and high rates of disability and psychopathology as indicated by the WSAS and mental health indices (PHQ9, GAD7, SPIN, Rosenberg’s self-esteem). At baseline, 92.3% met the IAPT caseness threshold for depression (PHQ9 >10) and 71% met the IAPT caseness threshold for anxiety (GAD7 >8). A repeated measures Freidman’s ANOVA over 3 timepoints (admission, discharge and 6 month follow-up) followed by Dunn-Bonferroni post hoc tests indicated statistically significant improvements from admission to discharge and admission to 6 months follow up. These improvements were seen in in somatic symptoms (PHQ15), depression (PHQ9) and anxiety (GAD7) symptoms, health and social functioning (HONOS), functional performance (COPM), health status (EQ5D-5L and EQ5D-EL VAS) and patient ratings of clinical global improvement (CGI). There was a high acceptance of this neuropsychiatry led MDT programme indicated by the patient reported visual analogue scale for benefit of programme averaging at 90%.ConclusionAn MDT can effectively deliver an outpatient programme for FNS which can serve as an alternative to an inpatient programme for patients with fewer or no nursing needs, for those whose preference is an outpatient setting or for those seeking to minimise disruption to work or family life. There may be potential cost reductions for institutions compared to inpatient treatment depending on local calculations. In the future, earlier identification and treatment of co-morbidities may modify some predisposing and perpetuating factors.
17 Presentation of Capras syndrome in anti-NMDA receptor encephalitis: a neuro-rehabilitation approach
Authors: Francis Richard , Ching Hui , Tyagi Himanshu , Swayne Orlando , Ajina Sara , Monaghan Bernadette 
Published: July 2020

Objectives/AimsCapgras syndrome is not often seen in neuro-rehabilitation and few case-reports of Capgras syndrome after anti-NMDA receptor encephalitis exist in literature. This case is relevant in light of how the Capgras sydrome and delusional beliefs affected this patient’s discharge planning, engagement with the multi- disciplinary team during rehabilitation and side-effects of pharmacological management. The challenging aspects of the case revolve around the patient’s persecutory beliefs, his delusional misidentifation disorder and its subsequent management.MethodsThe patient is a middle-aged gentleman with a background of relapsing- remitting multiple sclerosis who presented with seizures, headache, rash and intermittent fevers. He was initially treated as infectious meningoencephalitis and his condition deteriorated due to combination of behavioural change and seizures. A MRI-head suggested viral encephalitis but lumbar puncture and serum showed strongly positive for anti-NMDA receptor antibodies, thought potentially secondary to the patient’s disease-modifying drugs for his multiple sclerosis. After step-down from Intensive Care, the patient was noted to have fixed persecutory delusions regarding his wife and children. He believed that his wife and children were imposters and that the hospital and doctors within it were conspiring against him. He was managed initially with risperidone however the dose could not be increased due to the sedating side-effects resulting in an inability to engage with rehabilitation. He was subsequently changed to aripiprazole and escitalopram with the intention to decrease his delusional misidentification disorder. His delusions partially resolved with the patient accepting his children as his own, but not accepting his wife as truly ‘his wife’. The discharge destination represented a difficulty due to concerns that he may become aggressive (physically/verbally) to his wife if he continued to deem her an ‘imposter’. The patient was managed by sidestepping the conflict; he was more accepting of his wife if introduced as a ‘friend who loves him’. The patient was also allowed to drive the narrative rather than forced to deal with his Capgras syndrome. Results: A discharge home with support (including his wife) became feasible as his delusion thawed.ConclusionsManaging complicated patients like this involves not only pharmacological options but also psychological/psychiatric intervention and employment of non-confrontational techniques to help better engagement with rehabilitation.
18 Impulse control disorder secondary to dopaminergic therapies in parkinson’s – evaluating risk
Authors: Thomas Jane , Kobyleki Chris , Perera Nilika 
Published: July 2020

MethodLiterature review and original work for Parkinson’s Academy Masterclass.AimTo enhance the depth and breadth of evaluation of risk in the management of ICD secondary to dopaminergic therapies in PD.Summary Impulse control disorder (ICDs) can result in serious consequences for patients, their carers and families. They are characterized by a failure to resist a temptation, urge or impulse that may cause harm to oneself or others. They occur secondary to dopaminergic therapies in Parkinson’s, especially Dopamine agonists (DA). There is a dose and duration of treatment association. They may be accompanied by a degree of compulsion to act which increases risk. Risk factors associated their development have been identified including younger age at onset, being male, living alone, genetic and family history and preceding history of impulse control traits. A variety of screening tools exist but do not replace the detailed clinical interview. They may lead to criminal acts and consequent judicial proceedings, and whilst sentences may be commuted due to impaired capacity, the impact is frequently devastating. Class action law suits have been sought against the drug companies and prescribers have a clear medico-ethical responsibility for monitoring the drugs they prescribe. Management is often difficult and limited, necessitating slow withdrawal of the agent, and risk needs to be evaluated and managed throughout this period. An outline structure for evaluating risk is delineated focusing on areas of pre-disposing factors; detailed history of ICDs; degree of control and elucidation of risks.ResultsAbstract 18 Figure 1Risk analysis – complete – individual and collateral historiesConclusionWhilst screening tools are helpful in identifying and assessing certain ICDs, they do not replace the clinical interview. There is an issue regarding self- reporting. Insight by the patient or reluctance to share the nature or degree of the ICD may lead to low identification of ICDs. Collateral information from carers or other involved professionals is essential in a comprehensive evaluation of risk. Whilst a structured risk assessment is likely to be less targeted to the specific risks dependant on the nature of the ICD, a framework for evaluating and thinking about risk with patient, carers and other professionals involved could enhance practice and more accurately meet the guidance established for monitoring and managing risk outlined in GMC and NICE guidance.
20 International online survey of 1162 individuals with functional neurological disorder: demographics, symptom comorbidities, self- management strategies, and illness beliefs
Authors: Butler Matthew , Seynaeve Mathieu , Pick Susannah , Rucker James , Nicholson Timothy 
Published: July 2020

AimsFunctional neurological disorder (FND) is common and often severe. It is poorly understood, and there have been no international large-scale studies of self- management and illness beliefs in FND. We created a patient questionnaire to assess FND demographics, symptom comorbidity, self-management strategies (particularly in relation to prohibited substances), views on novel treatments, and illness beliefs.MethodsThe questionnaire was shared open access over a three-week period.Participants were recruited internationally through social media and patient groups. RESULTS: In total, 1162 respondents from 16 countries took the survey. Of these, 98% reported a formal diagnosis of FND from a consultant neurologist or other suitably trained clinician. Females constituted 86% of respondents, with an average age of 41.7 years (SD=12.50). Mean symptom duration was 7.69 years (SD=9.37) and average time from diagnosis was 2.24 years (SD=3.35), indicating a diagnostic lag of over 5 years. Symptom comorbidity was very high, with respondents reporting current: seizures (50%), gait disturbance (76%), loss of balance (77%), tremors (61%), muscle jerks/spasms (65%), altered sensations (79%), speech difficulties (65%), memory problems (80%), fatigue (93%), and headache (70%). Current psychiatric comorbidities – depression (43%), anxiety (51%), panic (20%), and PTSD (22%) - were also common. Illness beliefs varied, with respondents agreeing most strongly that FND is a combination of physical and stress/trauma-related factors. Respondents rated FND as having a severe effect on their life, with little control felt over their symptoms. Respondents had received a wide range of medical interventions, and many had tried alternative treatments. Prohibited substances such as cannabis, ketamine, and psychedelics had been used by 15% of respondents, with the majority experiencing no or minimal physical (90%) and psychological (95%) sequelae. Many respondents reported that they would be willing to try medically supervised psychedelic therapy if it was found to be safe and effective.ConclusionsThis large international online survey of FND patients indicated a striking co-occurrence of multiple symptoms. As expected, respondents reported that FND severely impacted on their lives, and many had lived with symptoms, which are not well managed by current medical therapies, for years. There was interest in novel putative treatments, such as medically supervised psychedelic therapies, which indicates a strong need to investigate alternative treatments for this poorly served patient group.
22 Whole-brain functional connectivity based on the graph theory analysiisn Psychogenic Non-Epileptic Seizures (PNES)
Authors: Arbabi M , Amiri S , Badragheh F , Mirbagheri MM , Asadi-Pooya AA 
Published: July 2020

ObjectiveDespite being the subject of many studies over the past two decades, mechanisms underlying psychogenic non-epileptic seizures (PNES) are still poorly understood. We tried to address this issue by utilizing brain functional connectivity analysis to identify brain regions with abnormal activities in patients with PNES. In a case-control study, we performed graph based network analysis, a robust technique that determines the organization of brain connectivity and characterizes topological properties of the brain networks.MethodsTwelve individuals with PNES and twenty-one healthy control subjects were examined. Resting state functional magnetic resonance imaging (rsfMRI) was acquired. All subjects were asked to keep their eyes open during the scanning process. The rsfMRI analysis consisted of pre-processing, extracting the functional connectivity matrix (FCM) based on the AAL atlas, threshold for binary FCM, constructing a graph network from FCM and extracting graph features, and finally statistical analysis. For all cortical and subcortical regions of the AAL atlas, we calculated measures of ‘degree,’ which is one of the features of the graph theory. Results: Our results revealed that, as compared to the healthy control subjects, patients with PNES had a significantly lower degree in some brain regions including their left and right insula (INS), right Putamen (PUT), left and right Supramarginal gyrus (SMG), right Middle occipital gyrus (MOG), and left and right Rolandic operculum (ROL). In contrast, degree was significantly greater in two regions [i.e., right Caudate (CAU) and left Inferior frontal gyrus orbital part (ORBinf)] in patients with PNES compared to that in controls.ConclusionOur findings suggest that functional connectivity of several major brain regions are different in patients with PNES compared with that in healthy individuals. While there is hypoactivity in regions important in perception, motor control, self- awareness, and cognitive functioning (e.g., insula) and also movement regulation (e.g., putamen), there is hyperactivity in areas involved in feedback processing (i.e., using information from past experiences to influence future actions and decisions) (e.g., caudate) in patients with PNES. The observation that individuals with PNES suffer from a wide range of abnormal activities in functional connectivity of their brain networks is consistent with the fact that PNES occur in a heterogeneous patient population; no single mechanism or contributing factor could explain PNES in all patients.
24 An analysis of sentiment and publicity of functional neurological disorder and non-epileptic attack disorder on twitter
Authors: May Felix , Kandasamy Rohan 
Published: July 2020

ObjectivesTwitter may provide a platform for clinicians and allied health professionals to publicise Functional Neurological Disorder (FND) and Non-Epileptic Attack Disorder (NEAD), and also provides a platform for patients and their communities to discuss the disorders. The prevalence and sentiment of discussions of these disorders have not been reported before now. We wrote a program to collect and analyse ‘Tweets’ about the subjects in their sentiment, connectivity and content.MethodsPreliminary searches and graph analyses identified the most relevant search terms. Tweets were collected automatically, along with available metadata. Sentiment analysis was performed using natural language processing with valence aware dictionary analysis, allowing automatic interpretation of text including idioms and ‘emojis’.Results13347 tweets were collected, with tweets not in English having been excluded from the analysis. The analysis showed a majority positive sentiment in the tweets. The most negative discourse was related to search terms: ‘Medically Unexplained Symptoms’ and ‘Psychosomatic’. Engagement with charities and tweets aiming to promote awareness of the disorders in question were common. Most frequent links to posts about FND were synonyms for the disorder, along with NEAD and charities and awareness movements. For NEAD, the most common links made were with FND, awareness campaigns, synonyms for NEAD, and Chronic Fatigue Syndrome.ConclusionsFND and NEAD have active communities on Twitter. These include both health professionals, patients and lay advocates. The overall sentiment is positive (p<0.05), but with some negativity from sceptical patients and some who are disappointed with their care, and with more negativity associated with certain search terms. (For example, more negative sentiment in tweets about ‘Medically Unexplained Symptoms’ compared to ones about ‘Functional Neurological Disorder’, p<0.0005). Public discourse analysis on websites such as Twitter may prove fruitful for monitoring patient understanding, trends in patient acceptance of diagnosis and factors contributing to these.
28 The link between functional neurological disorder (FND) & migraine: a systematic review
Authors: Khoja Lujain A , Coebergh Jan , Nicholson Timothy R 
Published: July 2020

BackgroundFND and migraine are both common disorders that occur in the absence of structural brain damage. Clinically, it is suspected that they might co- occur more often than would be expected by chance. It is important to distinguish them in some clinical situations, especially hemiplegic migraine from migraine that triggers FND with weakness but there are no systematic, and limited narrative reviews of the topic.ObjectivesTo study the association of FND and migraine with a systematic review of the literature.MethodsSearches for relevant literature were performed in July 2018 in MEDLINE and PsycINFO electronic databases without time limitation and augmented by hand searching the reference lists within these papers and the knowledge of literature from selected experts in the fieldResultsFive studies were identified; two from electronic, one from hand searches and two from experts. The total number of the sample size from the included studies was 2385. Findings generally indicated a positive association between migraine and FND. A prospective epidemiological study found that number of FND symptoms reported by migraineurs was 2.2 and 1.1 on controls. In a retrospective review of medical report study functional movement disorders occurred within 6 months or concomitantly with migraine onset in 71% of chronic migraine (CM) & 87.5% episodic migraine (EM) cases and the outcome effect of treating migraine on FND symptoms was a decrease or remission in 91% in CM and by 67% in EM. In a retrospective chart review study in the epilepsy monitoring unit, migraine diagnosis had a predictive value for diagnosing PNES & epilepsy OR=1.83, p<0.037 (95% CI: 1.04–3.32) compared to other biological factors. 40% of people diagnosed with FND reported having headache compared to 9% of controls in patients with other neurological disorders (P<0.0001). Unpublished data from a case-control study by Stone et al, revealed that 36% of 107 FND patients with limb weakness experienced migraine. Additionally, a clinical-based observational study from India of 1000 patients highlighted the common occurrence of psychogenic non-epileptic seizures (PNES) during acute migraine attacks.ConclusionsDespite a limited evidence base, migraine and FND appear to co-occur at elevated rates. It is imperative to explore how treating either migraine or FND impacts on the other. More studies are needed to confirm these findings and to investigate any potential mechanistic overlap.
29 Shedding light on the relationship between dyskinesia and impulsive compulsive behaviour disorders in Parkinson’s disease
Authors: Ricciardi Lucia , Angelis Andrea De , Siri Chiara , Horne Malcon , Leake Alison , Paviour Dominic , Edwards Mark , Morgante Francesca 
Published: July 2020

ObjectivesImpulsive compulsive behaviour disorders (ICB) and dyskinesia are common and disabling complications occurring during the course of Parkinson’s disease (PD). Their pathophysiology is not clear yet, however an association has been suggested. In the present study we aimed to evaluate the relationship between the presence of dyskinesia objectively detected using a wearable device and the presence of active and past ICB in PD patients.MethodsPatients’ demographic and clinical characteristics were gathered, PD medications were converted in total levodopa equivalent daily dose (LEDD) and LEDD dopamine-agonists. Patients were assessed with: Unified PD Rating Scale (UPDRS) parts I-IV and Rusk Dyskinesia Rating Scale (RDRS). To objectively measure dyskinesia we used a wearable devise, the Parkinson’s KinetiGraph™ system (PKG®), an accelerometry-based system for automated assessment of dyskinesia and bradykinesia. Past and active ICB were diagnosed with a semi-structured interview.Questionnaire for Impulsive-Compulsive Disorders in PD-Rating Scale (QUIP-RS) was employed to rate ICB severity. Psychiatric symptoms were evaluated including depression, anxiety, apathy and impulsivity.ResultsFifty-five PD patients were evaluated (36 males, mean age 60.7±6.7; mean disease duration 10.5±4.9). Twenty-five patients (45%) had dyskinesia as per PKG ‘Percent Time in Dyskinesia’ score. Nineteen patients had ICB (34%). There was no difference in active/past ICB between patients with and without dyskinesia (p=0.8 and 0.6). Patients with dyskinesia had higher LEDD dopamine-agonists (p=0.005), UPDRS-IV (p=0.02), RDRS (p=0.002). There was no difference between groups in psychiatric symptoms. We categorized patients in 3 groups (none, mild/moderate and severe dyskinesia) and we found no difference among groups in any demographic, clinical, psychiatric and behavioural variable except for LEDD dopamine-agonists (p=0.004), UPDRS-IV (p=0.06), RDRS (p=0.004).Binary regression analysis did not show any association between the presence of dyskinesia and ICB, depression, anxiety, apathy and impulsivity.ConclusionOur data suggest that ICB and dyskinesia are common but unrelated disorders in PD.