20 International online survey of 1162 individuals with functional neurological disorder: demographics, symptom comorbidities, self- management strategies, and illness beliefs

2020 ◽  
Vol 91 (8) ◽  
pp. e16.1-e16
Author(s):  
Matthew Butler ◽  
Mathieu Seynaeve ◽  
Susannah Pick ◽  
James Rucker ◽  
Timothy Nicholson
Keyword(s):  
Neurological Disorder ◽  
Online Survey ◽  
Management Strategies ◽  
Self Management ◽  
Patient Questionnaire ◽  
Symptom Duration ◽  
Illness Beliefs ◽  
Alternative Treatments ◽  
Wide Range ◽  
Functional Neurological Disorder

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.

scholarly journals Occupational therapy consensus recommendations for functional neurological disorder

2020 ◽  
Vol 91 (10) ◽  
pp. 1037-1045 ◽  
Author(s):  
Clare Nicholson ◽  
Mark J Edwards ◽  
Alan J Carson ◽  
Paula Gardiner ◽  
Dawn Golder ◽  
...  
Keyword(s):  
Occupational Therapy ◽  
Neurological Disorder ◽  
Best Practice ◽  
Management Strategies ◽  
Occupational Therapists ◽  
Therapy Assessment ◽  
Consensus Recommendations ◽  
Starting Point ◽  
Stage 1 ◽  
Functional Neurological Disorder

BackgroundPeople with functional neurological disorder (FND) are commonly seen by occupational therapists; however, there are limited descriptions in the literature about the type of interventions that are likely to be helpful. This document aims to address this issue by providing consensus recommendations for occupational therapy assessment and intervention.MethodsThe recommendations were developed in four stages. Stage 1: an invitation was sent to occupational therapists with expertise in FND in different countries to complete two surveys exploring their opinions regarding best practice for assessment and interventions for FND. Stage 2: a face-to-face meeting of multidisciplinary clinical experts in FND discussed and debated the data from stage 1, aiming to achieve consensus on each issue. Stage 3: recommendations based on the meeting were drafted. Stage 4: successive drafts of recommendations were circulated among the multidisciplinary group until consensus was achieved.ResultsWe recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework. Education, rehabilitation within functional activity and the use of taught self-management strategies are central to occupational therapy intervention for FND. Several aspects of occupational therapy for FND are distinct from therapy for other neurological conditions. Examples to illustrate the recommendations are included within this document.ConclusionsOccupational therapists have an integral role in the multidisciplinary management of people with FND. This document forms a starting point for research aiming to develop evidence-based occupational therapy interventions for people with FND.

scholarly journals Understanding foreign accent syndrome

2019 ◽  
Vol 90 (11) ◽  
pp. 1265-1269 ◽  
Author(s):  
Laura McWhirter ◽  
Nick Miller ◽  
Catriona Campbell ◽  
Ingrid Hoeritzauer ◽  
Andrew Lawton ◽  
...  
Keyword(s):  
Neurological Disorder ◽  
Online Survey ◽  
Case Series ◽  
Foreign Accent ◽  
Online Support ◽  
Professional Networks ◽  
Recruitment Methods ◽  
Foreign Accent Syndrome ◽  
Irritable Bowel ◽  
Functional Neurological Disorder

ObjectiveForeign accent syndrome (FAS) is widely understood as an unusual consequence of structural neurological damage, but may sometimes represent a functional neurological disorder. This observational study aimed to assess the prevalence and utility of positive features of functional FAS in a large group of individuals reporting FAS.MethodsParticipants self-reporting FAS recruited from informal unmoderated online support forums and via professional networks completed an online survey. Speech samples were analysed in a subgroup.ResultsForty-nine respondents (24 UK, 23 North America, 2 Australia) reported FAS of mean duration 3 years (range 2 months to 18 years). Common triggers were: migraine/severe headache (15), stroke (12), surgery or injury to mouth or face (6) and seizure (5, including 3 non-epileptic). High levels of comorbidity included migraine (33), irritable bowel syndrome (17), functional neurological disorder (12) and chronic pain (12). Five reported structural lesions on imaging. Author consensus on aetiology divided into, ‘probably functional (n=35.71%), ‘possibly structural’ (n=4.8%) and ‘probably structural’ (n=10.20%), but positive features of functional FAS were present in all groups. Blinded analysis of speech recordings supplied by 13 respondents correctly categorised 11 (85%) on the basis of probable aetiology (functional vs structural) in agreement with case history assignment.ConclusionsThis largest case series to date details the experience of individuals with self-reported FAS. Although conclusions are limited by the recruitment methods, high levels of functional disorder comorbidity, symptom variability and additional linguistic and behavioural features suggest that chronic FAS may in some cases represent a functional neurological disorder, even when a structural lesion is present.

Playing-Related Health Problems Among Instrumental Music Students at a University in Malaysia

2016 ◽  
Vol 31 (3) ◽  
pp. 151-159 ◽  
Author(s):  
Karen Lonsdale ◽  
Ong Kuan Boon
Keyword(s):  
Instrumental Music ◽  
Online Survey ◽  
Management Strategies ◽  
Educational Background ◽  
Health Problems ◽  
Self Report ◽  
Music Students ◽  
Physical Problems ◽  
Study Results ◽  
Wide Range

Musicians from a wide range of backgrounds experience playing-related health problems including musculoskeletal disorders, hearing loss, and performance anxiety. Few studies have focused specifically on the health concerns of musicians in Malaysia. AIMS: This study aimed to investigate playing-related health problems among student musicians at a university in Malaysia as well as their knowledge and awareness of playing-related health problems. METHODS: Instrumental music students enrolled in undergraduate and post-graduate university music courses (n=98) participated in a self-report online survey which addressed aspects such as educational background, playing experience, knowledge and awareness of musicians’ health issues, history of physical problems, lifestyle factors, and prevention and management strategies. RESULTS: Of the total participants, 28.9% reported that they were currently experiencing playing-related pain in a body part, and 46.4% had experienced playing-related pain at some time. More than half (56.7%) felt that they have not received enough information or advice on playing-related health during their current studies. Musicians who experienced playing-related pain, tension, and discomfort reported the main problem sites to be the fingers and hands, arms, neck, and shoulders. CONCLUSIONS: The study results demonstrate that Malaysian university music students are affected by similar types of playing-related physical problems as their counterparts around the world. A greater awareness and knowledge of injury prevention and management strategies is needed so that these music students can sustain healthy playing careers.

scholarly journals The Pain at Work Toolkit for Employees with Chronic or Persistent Pain: A Collaborative-Participatory Study

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 56
Author(s):  
Holly Blake ◽  
Sarah Somerset ◽  
Sarah Greaves
Keyword(s):  
Participatory Design ◽  
Online Survey ◽  
Management Strategies ◽  
Work Capacity ◽  
Persistent Pain ◽  
Self Management ◽  
Evidence Based ◽  
Or Education ◽  
Management Tools ◽  
Stakeholder Consultation

Self-management tools for people with chronic or persistent pain tend to focus on symptom reporting, treatment programmes or exercise and do not address barriers to work, facilitators of work ability, or workplace pain self-management strategies. We developed the Pain at Work (PAW) toolkit, an evidence-based digital toolkit to provide advice on how employees can self-manage their pain at work. In a collaborative-participatory design, 4-step Agile methodology (N = 452) was used to co-create the toolkit with healthcare professionals, employers and people with chronic or persistent pain. Step 1: stakeholder consultation event (n = 27) established content and format; Step 2: online survey with employees who have persistent pain (n = 274) showed employees fear disclosing their condition, and commonly report discrimination and lack of line manager support. Step 3: online employer survey (n = 107) showed employers rarely provide self-management materials or education around managing pain at work, occupational health recommendations for reasonable adjustments are not always actioned, and pain-related stigma is common. Step 4: Toolkit development integrated findings and recommendations from Steps 1–3, and iterative expert peer review was conducted (n = 40). The PAW toolkit provides (a) evidence-based guidelines and signposting around work-capacity advice and support; (b) self-management strategies around working with chronic or persistent pain, (c) promotion of healthy lifestyles, and quality of life at work; (d) advice on adjustments to working environments and workplace solutions to facilitate work participation.

scholarly journals A prescription of information – promoting symptom self-management in people with functional neurological disorder (FND)

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S182-S182
Author(s):  
Hashim Dadah ◽  
Uzoma Anthony-Uzoeto ◽  
Sadat Yazdouni ◽  
Ali Aweis-Asanga ◽  
Alan Dunlop ◽  
...  
Keyword(s):  
Patient Education ◽  
Neurological Disorder ◽  
Perceived Usefulness ◽  
Social Model ◽  
Self Management ◽  
Production Cycle ◽  
Improvement Project ◽  
Patient Education Material ◽  
Education Material ◽  
Functional Neurological Disorder

AimsFunctional Neurological Disorder (FND) is known to be associated with high healthcare resource utilisation and poor quality of life. Patients’ understanding of the disorder is considered instrumental in improving prognosis.We produced a symptom self-management patient education strategy with a booklet and FND symptoms recording template in a community neuropsychiatry setting. We embedded this psychoeducation intervention in a post-nursing triage model of care.MethodA co-production cycle of patient education material was implemented as part of a Quality Improvement Project (QIP) at East Kent Neuropsychiatry Service. Year 4 medical students completed their first QIP cycle involving 4 students, 2 multidisciplinary team members and 4 patients with functional neurological presentations. An FND leaflet and symptom recording template was produced and reviewed using feedback domains such as leaflet readability, perceived usefulness, and template design. The revised version of leaflet was then pilot-tested in second QIP cycle via email or post to 12 patients awaiting their group psychology or neuropsychiatry appointments for treatment of FND. The uptake and impact of leaflet was assessed using telephone-based structured feedback collection.ResultThe first QIP cycle included 10 participants and generated qualitative knowledge domains, providing examples of different types of FND presentations and a biological-psychological-social model explaining onset and/or recurrence of FND symptoms. Group patient feedback and co-production input allowed inclusion of the patient voice and a re-design of leaflet and symptom recording template.The second QIP cycle involved 12 participants: feedback was collected two weeks after circulation of patient education material. Only 5 participants (42%) had read and used their education leaflet and template during this period. Patients described the booklet as useful overall, but thought it to be more useful at the point of diagnosis and referral to neuropsychiatry. Qualitatively, patients wished there to be more emphasis on FND being explained as “less psychiatric, more a neuropsychiatric problem”, and that it would be “very good for someone who had just been diagnosed”. 80% of responders rated the leaflet quality 8/10 or above. These respondents felt that the leaflet had helped them understand their condition better than they did previously. Usefulness of an additional self-formulation flowchart was rated as 8/10 or below by all patients - with several finding it difficult to use.ConclusionOur QIP supports the need for early patient education when discussing diagnosis of FND. The finding of 42% uptake within two weeks of leaflet dispatch is encouraging.

scholarly journals Self-management strategies amongst Australian women with Endometriosis: a national online survey

2019 ◽  
Vol 6 ◽  
pp. S5-S6
Author(s):  
Mike Armour ◽  
Justin Sinclair ◽  
Jane Chalmers ◽  
Caroline Smith
Keyword(s):  
Online Survey ◽  
Management Strategies ◽  
Self Management

scholarly journals Functional cognitive disorder: dementia’s blind spot

Brain ◽  
2020 ◽  
Vol 143 (10) ◽  
pp. 2895-2903 ◽  
Author(s):  
Harriet A Ball ◽  
Laura McWhirter ◽  
Clive Ballard ◽  
Rohan Bhome ◽  
Daniel J Blackburn ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Neurological Disorder ◽  
Blind Spot ◽  
Cognitive Disorder ◽  
Cognitive Difficulties ◽  
Descriptive Term ◽  
Wide Range ◽  
Internal Inconsistency ◽  
Definition Of ◽  
Functional Neurological Disorder

Abstract An increasing proportion of cognitive difficulties are recognized to have a functional cause, the chief clinical indicator of which is internal inconsistency. When these symptoms are impairing or distressing, and not better explained by other disorders, this can be conceptualized as a cognitive variant of functional neurological disorder, termed functional cognitive disorder (FCD). FCD is likely very common in clinical practice but may be under-diagnosed. Clinicians in many settings make liberal use of the descriptive term mild cognitive impairment (MCI) for those with cognitive difficulties not impairing enough to qualify as dementia. However, MCI is an aetiology-neutral description, which therefore includes patients with a wide range of underlying causes. Consequently, a proportion of MCI cases are due to non-neurodegenerative processes, including FCD. Indeed, significant numbers of patients diagnosed with MCI do not ‘convert’ to dementia. The lack of diagnostic specificity for MCI ‘non-progressors’ is a weakness inherent in framing MCI primarily within a deterministic neurodegenerative pathway. It is recognized that depression, anxiety and behavioural changes can represent a prodrome to neurodegeneration; empirical data are required to explore whether the same might hold for subsets of individuals with FCD. Clinicians and researchers can improve study efficacy and patient outcomes by viewing MCI as a descriptive term with a wide differential diagnosis, including potentially reversible components such as FCD. We present a preliminary definition of functional neurological disorder–cognitive subtype, explain its position in relation to other cognitive diagnoses and emerging biomarkers, highlight clinical features that can lead to positive diagnosis (as opposed to a diagnosis of exclusion), and red flags that should prompt consideration of alternative diagnoses. In the research setting, positive identifiers of FCD will enhance our recognition of individuals who are not in a neurodegenerative prodrome, while greater use of this diagnosis in clinical practice will facilitate personalized interventions.

scholarly journals A study protocol for a multicenter randomized pilot trial of a dyadic, tailored, web-based, psychosocial, and physical activity self-management program (TEMPO) for men with prostate cancer and their caregivers

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sylvie D. Lambert ◽  
Lindsay R. Duncan ◽  
Janet Ellis ◽  
John Wellesley Robinson ◽  
Carly Sears ◽  
...  
Keyword(s):  
Physical Activity ◽  
Prostate Cancer ◽  
Short Form ◽  
Management Strategies ◽  
Management Program ◽  
Dyadic Coping ◽  
Self Management ◽  
Web Based ◽  
Wide Range ◽  
To Receive

Abstract Background Prostate cancer predisposes patients and caregivers to a wide range of complex physical and psychosocial challenges, and interventions must incorporate a wide range of self-management strategies to help patients and their caregivers effectively cope with cancer challenges. To palliate this need, our team recently developed and evaluated the initial acceptability of a dyadic, Tailored, wEb-based, psychosocial, and physical activity self-Management PrOgram (TEMPO). TEMPO is a 10-week, interactive, web-based intervention consisting of five modules designed to help dyads manage their physical and psychosocial needs. It aims to teach dyads new self-management strategies and encourages them to increase their physical activity (PA) levels, mainly through walking and strength-based exercises. Initial acceptability evaluation of TEMPO revealed high user satisfaction, in addition to having a number of potential benefits for participants. After integrating suggested changes to TEMPO, the proposed pilot study aims to further test the acceptability and feasibility of TEMPO. Methods This study is a multicenter, stratified, parallel, two-group, pilot randomized control trial (RCT), where patient–caregiver dyads are randomized (stratified by anxiety level) to receive (a) TEMPO or (b) usual care. Participants (n goal = 40) are recruited across Canada at participating cancer centers and through self-referral (e.g., online recruitment). Patient inclusion criteria are (a) having received prostate cancer treatment within the past 2 years or scheduled to receive treatment, (b) identified a primary caregiver willing to participate in the study, and (c) has access to the Internet. Eligible caregivers are those identified by the patient as his primary source of support. Dyads complete a baseline questionnaire (T1) and another one 3 months later (T2) assessing various aspects of physical and emotional functioning (e.g., the Medical Outcomes Study (MOS) 12-item Short Form Health Survey (SF-12), the Hospital Anxiety and Depression Scale (HADS), and the Perceived Stress Scale (PSS)), self-management behaviors (e.g., the Health Education Impact Questionnaire (heiQ)), physical activity (the International Physical Activity Questionnaires (IPAQ) and the Multidimensional Self-efficacy for Exercise Scale (MSES)), and dyadic coping (the Dyadic Coping Inventory (DCI)). Dyads that used TEMPO are also asked to participate in a semi-structured exit interview exploring their overall experience with the program. Discussion This feasibility analysis will begin to develop the knowledge base on TEMPO’s value for men with prostate cancer and their caregivers to inform a larger trial. Trial registration NCT04304196

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