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Occupational Therapy Consensus Recommendations for Functional Neurological Disorder

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Occupational Therapy Consensus Recommendations for Functional Neurological Disorder Occasional essay J Neurol Neurosurg Psychiatry: first published as 10.1136/jnnp-2019-322281 on 30 July 2020. Downloaded from Occupational therapy consensus recommendations for functional neurological disorder Clare Nicholson ,1 Mark J Edwards,2 Alan J Carson,3 Paula Gardiner,4 Dawn Golder,5 Kate Hayward,1 Susan Humblestone,6 Helen Jinadu,7 Carrie Lumsden,8 Julie MacLean,9 Lynne Main,10 Lindsey Macgregor,11 Glenn Nielsen,2 Louise Oakley,12 Jason Price,13 Jessica Ranford,9 Jasbir Ranu,1 Ed Sum,14 Jon Stone 3 ► Additional material is ABSTRact jerks and dystonia), sensory symptoms, cognitive published online only. To view Background People with functional neurological deficits and seizure-like events (commonly known please visit the journal online as dissociative seizures or non- epileptic seizures). (http:// dx. doi. org/ 10. 1136/ disorder (FND) are commonly seen by occupational jnnp- 2019- 322281). therapists; however, there are limited descriptions in the Fatigue and persistent pain are also commonly literature about the type of interventions that are likely experienced as part of the disorder. Symptoms For numbered affiliations see to be helpful. This document aims to address this issue by can present acutely and resolve quickly or can be end of article. providing consensus recommendations for occupational long lasting. Regardless of duration, those affected therapy assessment and intervention. frequently experience high levels of distress, Correspondence to Methods The recommendations were developed in four disability, unemployment, social care utilisation and Mrs Clare Nicholson, Therapy 2 Services, University College stages. Stage 1: an invitation was sent to occupational reduced quality of life. The stigma associated with London Hospitals NHS therapists with expertise in FND in different countries to FND contributes to the burden of the diagnosis.3 Foundation Trust National complete two surveys exploring their opinions regarding OT is generally recognised as an integral part Hospital for Neurology and best practice for assessment and interventions for FND. of multidisciplinary rehabilitation for people with Neurosurgery, London WC1E 6BT, UK; clare. nicholson6@ Stage 2: a face- to- face meeting of multidisciplinary FND. As a therapy, it has face validity for FND; nhs. net clinical experts in FND discussed and debated the data however, there is little published evidence to from stage 1, aiming to achieve consensus on each issue. support its efficacy, and there are few published Received 23 October 2019 Stage 3: recommendations based on the meeting were descriptions of interventions to guide practice.4 5 Revised 12 March 2020 drafted. Stage 4: successive drafts of recommendations Given that FND differs in a number of important Accepted 1 April 2020 copyright. Published Online First 30 July were circulated among the multidisciplinary group until ways from other neurological conditions, typical 2020 consensus was achieved. OT neurorehabilitation strategies may not be Results We recommend that occupational therapy directly translatable to people with FND and a treatment for FND is based on a biopsychosocial more specific approach may be required. aetiological framework. Education, rehabilitation The current evidence base for OT in FND reha- within functional activity and the use of taught self- bilitation is limited to several studies of multidis- management strategies are central to occupational ciplinary rehabilitation,6–9 including one with a therapy intervention for FND. Several aspects of randomised design.10 The interventions delivered occupational therapy for FND are distinct from therapy by OTs in these studies are described only briefly; for other neurological conditions. Examples to illustrate they include: retraining normal movement within the recommendations are included within this document. function, graded reintroduction to daily activities, http://jnnp.bmj.com/ Conclusions Occupational therapists have an integral anxiety management and the reestablishment of role in the multidisciplinary management of people with structure and routine. Outcomes from these studies FND. This document forms a starting point for research are promising, reporting improvement in scales of aiming to develop evidence-based occupational therapy physical function and quality of life, immediately interventions for people with FND. after treatment and at follow-up periods of 12–25 months.7–9 High levels of patient acceptability have been shown in at least one study that identified that on September 27, 2021 by guest. Protected OT compared favourably with other treatments.9 INTRODUCTION Evidence from randomised control trials is needed Occupational therapists (OTs) assist people with to demonstrate effectiveness of the specific rehabili- physical and mental health difficulties across the tation interventions described in these studies. lifespan to enable participation in daily activities. In summary, OT is recognised as part of multidis- OTs are dually trained in physical and mental health ciplinary intervention for FND; however, there is a rehabilitation. This skill set combined with a focus limited evidence base, and the role of OT within the on function rather than impairment makes OTs MDT is not well defined. With this paper, we aim to © Author(s) (or their employer(s)) 2020. No ideally suited to help people with functional neuro- develop a broad set of consensus recommendations commercial re-use . See rights logical disorder (FND). to guide OT practice for people with FND across and permissions. Published FND is characterised by symptoms of altered the range of clinical settings (hospital, rehabilitation by BMJ. voluntary motor or sensory function with clinical ward and community) and time following symptom To cite: Nicholson C, findings providing evidence of incompatibility onset (acute to chronic). These recommendations Edwards MJ, Carson AJ, et al. between the symptoms and recognised neurological come from our experience working with people with J Neurol Neurosurg Psychiatry or medical conditions.1 Symptoms are diverse and FND aged 16 years and over; however, recommen- 2020;91:1037–1045. can include weakness, movement disorders (tremor, dations may have transferability to adolescent and Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281 1037 Occasional essay J Neurol Neurosurg Psychiatry: first published as 10.1136/jnnp-2019-322281 on 30 July 2020. Downloaded from paediatric populations. This work aims to complement existing psychiatry and is a genuine cause of disability due to motor and clinical recommendations for FND11 12 and to form a starting non- motor symptoms. Within the patient population, there is point from which to develop evidence- based interventions. considerable heterogeneity in terms of symptom presentation, disability and psychiatric comorbidity. The aetiology is best METHODS understood within a biopsychosocial framework, considering Consensus process predisposing, precipitating and perpetuating factors, each of Data collection and analysis was based on a Delphi method, with which can include biological, psychological and/or social events four key stages. (see table 1 below). Stage 1: in 2017/2018, 12 OTs from different countries with The motor symptoms of FND can be considered, at one level, extensive experience in FND were invited to complete two as abnormal patterns of movement, that are ‘driven’ by involun- online surveys exploring assessment and interventions for FND. tary self- focused attention. Thus, when the person’s attention is The surveys were developed, data collated and summarised (by redirected away from their body (distraction), abnormal move- CN). Elaboration and clarification were sought through a series ment reduces or disappears. Non- motor symptoms, including of follow- up emails. sensory changes, are also likely to be similarly affected by uncon- Stage 2: the expert OT group, together with experts in FND scious, self- focused attention. from other clinical disciplines were invited to take part in a People with FND commonly experience other health prob- face- to- face meeting in Edinburgh, UK, in September 2018. The lems; this can include psychiatric comorbidity, coexisting collated data from stage 1 was discussed and debated. neurological disease and other functional symptoms. Common Stage 3: recommendations based on the meeting were drafted. coexisting symptoms such as chronic pain and fatigue are often 13 14 Stage 4: a series of drafts were sent to the multidisciplinary important determinants of disability and quality of life. group for feedback. Participants either endorsed each section of the draft or provided comments and suggestions. This process Role and rationale for OT for FND continued until a consensus was reached. The term ‘occupational’ in OT refers to any activity that has meaning and importance to an individual, based on what they Participants need to do, want to do or are expected to do within societal and Occupational therapists cultural norms.15 The group represented OTs from three nations: England (n=7), Common reasons to refer to occupational therapy: Scotland (n=3) and the USA (n=2) who work with people ► Disability affecting participation in daily activities (eg, with FND in a variety of clinical settings: acute neurological personal care, domestic activities, childcare, community or inpatients, neurological outpatients, neurological community leisure activities). copyright. rehabilitation, neuropsychiatry outpatients,
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