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Abstract
Background Functional (psychogenic) motor symptoms are commonly encountered in clinical neurology. Physiotherapy has face validity as a treatment for such symptoms and, anecdotally, referral of patients with functional motor symptoms (FMS) to physiotherapy services is common practice by neurologists. Here the authors sought to explore exposure to and attitudes towards patients with FMS among neurophysiotherapists.
Method The authors used an internet survey to gather information on the knowledge and attitudes of patients with FMS among 1402 members of a UK neurophysiotherapy organisation.
Results The response rate was 61%. Most physiotherapists saw patients with FMS, and for 25% of respondents these patients made up over 10% of their workload. Respondents were moderately interested in treating these patients (ranking them sixth out of 10 neurological conditions), but had low self-judged knowledge. Most respondents felt physiotherapy had more to offer patients with FMS, but felt poorly supported by referring neurologists and by inadequate service structures.
Conclusions Neurologists frequently refer patients with FMS to neurophysiotherapy services. Physiotherapists in general are interested in treating such patients and feel physiotherapy to be an appropriate treatment. However, inadequate service structures, knowledge and support from non-physiotherapy colleagues are judged to be barriers to provision of care.
- Movement disorders
- motor physiology
- neurophysiology
- motor
- neuropsychiatry
- functional/psychogenic/medically unexplained/hysterical neurological
- pseudoseizures
- somatisation disorder
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- Movement disorders
- motor physiology
- neurophysiology
- motor
- neuropsychiatry
- functional/psychogenic/medically unexplained/hysterical neurological
- pseudoseizures
- somatisation disorder
Introduction
Functional (psychogenic) neurological symptoms are one of the commonest reasons for patients to seek neurological advice.1 These disorders are associated with long-term disability, poor quality of life and economic impact on health and social care systems.2 Despite this, management pathways are not specified (either by guidelines or by a sufficient evidence base for treatment), and outcome in many patients is poor.3–5
About half of those with functional neurological symptoms have motor problems (weakness, gait disturbance, additional movement such as tremor or jerks).1 For such patients, physiotherapy has face validity as a treatment. Physiotherapy is likely to be more acceptable to patients with functional motor symptoms (FMS) than cognitive-behavioural/psychological approaches that many patients do not feel are relevant to their symptoms.6 There is some limited evidence that physiotherapy approaches can be successful, either as an outpatient7 8 or as part of a multidisciplinary inpatient treatment programme.9–11 For example, in a recent retrospective non-randomised study from the Mayo clinic, 60% of patients with FMS of mean duration 17 months treated intensively as outpatients with a predominantly physical regime had sustained improvement in their symptoms over a 2-year follow-up period.8
If neurophysiotherapists are expected to deliver treatment to patients with FMS either by default (as is anecdotally the current situation) or as part of future evidence based service development, then their experiences of and attitudes towards such patients are of importance. This current study used an online survey to explore exposure to and attitudes towards patients with FMS among UK neurophysiotherapists.
Methods
We surveyed members of Association of Chartered Physiotherapists in Neurology (ACPIN), a UK based organisation for chartered physiotherapists working in neurology with over 2250 members. We surveyed those members who had consented on joining ACPIN to receive research questionnaires by email. We used an online survey tool (Opinio, ObjectPlanet Inc., Oslo, Norway) to distribute a purpose-designed questionnaire via email (see online supplementary material for the questionnaire and full results). The data were anonymised, and no personal identifiers were collected. Two reminder emails were sent 1 and 2 weeks after the original email. A prize of an e-reader was offered to encourage responses.
Results
Response rates
From 1402 valid email addresses, the following were excluded: automatic responses indicating that addressees were away until after the survey was due to close (184), addressees who could not fill in the survey because they were no longer treating patients (51), those who were students (2) or were not practising within neurology services (15). From the remaining 1150 email addresses we received 702 responses, a response rate of 61%.
Demographics and experience
Ninety-one per cent of respondents were women. Seventy-two per cent of respondents were between 26 and 45 years of age. Mean years of experience in physiotherapy and in neurophysiotherapy were 12.9 and 9.4 years, respectively. There was a fairly even split between those seeing the majority of patients in an acute inpatient setting (19%), an inpatient rehabilitation setting (25%), an outpatient setting (22%) and a community setting (26%). The highest degree associated with physiotherapy was an undergraduate degree for the majority (61%), but some had higher degrees such as diplomas (11%), Masters (21%) or PhDs (2%).
Functional neurological symptoms: terminology and exposure
Most physiotherapists (68%) preferred to use the word ‘functional’ when discussing patients with functional symptoms with colleagues, but only 27% used this word with patients. The majority of physiotherapists (52%) used the term ‘medically unexplained symptoms’ with patients (see online supplementary material).
Most respondents (77%) saw patients with FMS, and in most (51%) FMS made up 5% of their normal case load. Approximately 25% of respondents were spending 10% or more of their time working with patients with FMS.
Interest and knowledge about functional symptoms
Respondents were given a list of 10 conditions that physiotherapists with an interest in neurology might treat and were asked to rank them in order of their interest in treating and knowledge about each condition (figure 1). The most popular disorder was stroke, with 54% of respondents rating this as the condition they were most interested in treating. The least popular disorder was chronic back pain (65% rated this as the condition they were least interested in treating). Functional disorders were rated by most as of moderate interest (51% ranked it between their third and sixth conditions of most interest). In terms of condition of least interest, treatment of functional symptoms was rated above treatment of patients with chronic back pain, vestibular disorders, motor neuron disease and brain tumour.
Ranking of neurological disorders in order of interest and knowledge. Figure shows ranking scores for respondents regarding their interest in (grey bars) and knowledge (black bars) about treatment of different neurological conditions. In the questionnaire, respondents were asked to give a ranking for knowledge and interest for each disorder. We calculated an overall ranking across respondents by summing the rankings for each item and dividing it by the number of respondents. Thus, if a disorder was ranked first by all respondents, then the ranking score would be one, and if a disorder was ranked 10 by all respondents, then the ranking score would be 10. Note that the y-axis scale is inverted to give a larger bar size to disorders with more favourable rankings. TBI, traumatic brain injury; MND, motor neurone disease.
Stroke was the disorder that physiotherapists felt most knowledgeable about (64% rated this as their first choice). Functional symptoms were associated with low ratings in terms of knowledge (over 50% of respondents ranked their knowledge of functional disorders between the seventh and tenth conditions they felt most knowledgeable about) (figure 1).
Attitudes about feigning were mixed. Forty-five per cent of respondents felt that over a fifth of patients were partially feigning symptoms, and 21% felt that over a fifth of patients were completely feigning their symptoms. We asked some questions probing factual knowledge about functional symptoms. While epidemiological data in patients with FMS suggest rates of child, sexual or physical abuse of around 3%–14%,12–14 33% of respondents estimated rates of abuse to be over 20%. Published studies suggest misdiagnosis rates by neurologists of symptoms as functional when they are in fact due to organic disease are low (<5%15). However, most respondents (69%) thought misdiagnosis rates were over 10%, with 17% indicating that they estimated that misdiagnosis occurred in more than 30% of cases.
Practical aspects of physiotherapy care for FMS
While most respondents (75%) felt well supported by physiotherapy colleagues, fewer (25%) agreed that they were well supported by their referring neurologist. Most felt physiotherapy to be an appropriate treatment (82%) and indeed had more to offer patients with FMS than is currently the case (72%). However, 14% felt they were working outside the boundaries of their profession when treating patients with FMS, and 18% worried they might be making the patient worse. Difficulty discharging the patient was described by 42% and many agreed that there were a lack of recognised treatments (39%).
Free text comments
We offered respondents an opportunity to provide free text comments at the end of the survey. One hundred and seventy-six (25%) of respondents wrote comments. A number indicated dissatisfaction with current service structures, particularly with neurological and psychological support: ‘…the problem we have as physios is often that consultants aren't honest with patients about their true diagnosis which makes our treatment and explanation of symptoms more difficult’, ‘The main issue we have is the lack of psychological support in conjunction with the physiotherapy’, ‘… the referring consultant has not enlightened the patient as to their non-organic condition. Often they are only told that all their tests are normal and that they are unable to find an explanation for their condition. They are then referred to physiotherapy and they turn up in outpatients wondering how we are going to treat them without a diagnosis.’ Some respondents indicated success from multidisciplinary working: ‘Having worked on a unit for patients with conversion disorder …I have seen amazing results with an MDT approach, however treating these patients on acute inpatient wards can be very challenging’.
Discussion
Neurophysiotherapists are in the front line of treatment of patients with functional neurological symptoms. This is the first survey of their attitudes, knowledge and experience with regard to these patients. We found that this patient group was commonly seen by neurophysiotherapists, and that they had moderate levels of interest but low self-judged knowledge.
FMS are commonly seen in neurology practice.1 The survey provides evidence that such patients are commonly referred by neurologists to physiotherapists for treatment: for a quarter of respondents these patients made up over 10% of their workload. Respondents rated treatment of FMS as of moderate interest compared with other neurological conditions and felt that physiotherapy had more to offer such patients. This is in contrast to more negative views expressed by neurologists: a recent survey finding these symptoms to be the least popular of 20 conditions treated.16 However, some physiotherapists, like neurologists and neurological nurses,17 18 harbour concerns about feigning in a substantial proportion of patients.
Most respondents believed physiotherapy to be a valid treatment for patients with FMS but there was dissatisfaction with current service structures. Free text responses indicated that such patients often appeared to be ‘dumped’ on physiotherapy services without a clear diagnosis and explanation of symptoms being given, and without adequate support for treating neurophysiotherapists from other relevant professionals, especially neurologists. There were reports of successful services, in keeping with some published studies,8–11 where coordinated multidisciplinary working produced good results, but even there a lack of continuity with community therapy services was highlighted as problematic.
This work is limited by the inability of short survey questions to explore in depth the experiences and attitudes of neurophysiotherapists regarding these patients, and that the sample only reflects the views of neurophysiotherapists working in the UK. However, the data strongly suggest that current service structures and knowledge are inadequate. Neurologists need to consider how referral of such patients to neurophysiotherapy is managed, and how they interface with therapists providing treatment (box 1). There also is a clear need for guidelines for physiotherapy management. The data encourage further studies of physical treatments to provide evidence for how physiotherapy services could best be structured to deliver successful treatments to patients with FMS.
Neurology referral to physiotherapy for functional motor symptoms. Suggested non-evidence based guidance
Refer to physiotherapy. Consider referring all patients with physical disability to physiotherapy whether or not it has an ‘organic’ basis.
Give the patient a diagnosis. Physiotherapy is much more likely to be helpful if the patient has been given an explicit diagnosis which, regardless of the label used, includes an understanding that the symptoms are genuine and due to a potentially reversible condition. Referring with no diagnosis or ‘disease excluded’ is inadequate.
Document the diagnosis. Documentation of the diagnosis and explanation given is likely to help the physiotherapist maintain continuity of explanation which in turn is likely to aid treatment.
Explicit follow-up and liaison arrangements. Neurologists should indicate their own follow-up arrangements to physiotherapy, preferably seeing the patient at least once to check that the patient understands the diagnosis. Physiotherapists should be able to contact the neurologist if they have queries or concerns, especially about new symptoms developing during treatment. Ideally this should involve formal liaison between the neurologist and the physiotherapist regarding referrals and treatment.
Physiotherapy treatment. The evidence base for what physiotherapists should actually do remains slim. Anecdotally, the best approach often needs to vary with some patients requiring an exclusively physical approach and others benefiting from acknowledging psychological barriers to recovery and addressing other factors that directly affect symptoms such as fatigue, pain and maladaptive behaviours. In an acute setting, encouraging early standing regardless of ‘on the bed’ strength and avoiding aids wherever possible may be helpful. At all stages independence with activities of daily living should be encouraged. Functional symptoms are often worse when attention is drawn to them and movement patterns tend to break down if a patient is overly consciously controlling what should be an automatic movement. To avoid this, therapy exercises should attempt to stimulate more automatic movement and the use of distraction techniques may be helpful. In most cases, addressing functional activities such as transfers and walking, with a hands-off approach, is more beneficial than treatments targeted as specific impairments such as weakness. Other key roles of the physiotherapist are helping the patient to understand the diagnosis and preventing secondary musculoskeletal changes. Building trust and maintaining a good therapeutic relationship is important for successful physiotherapy treatment and for discharging a patient who does not respond to treatment. The patient and referring neurologist should be copied into a comprehensive discharge report. Patients can access self-help information at http://www.neurosymptoms.org (free) or via a self-help book.19 The few physically based treatment studies8–11 contain further ideas for rehabilitation. Not all patients should be expected to be treatable.
Acknowledgments
We thank Audrey Matthews and Melanie Brown at the Southern General Hospital, Glasgow, for additional physiotherapy tips.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Files in this Data Supplement:
- Download Supplementary Data (PDF) - Manuscript file of format pdf
- Download Supplementary Data (PDF) - Manuscript file of format pdf
Footnotes
Funding MJE is supported by an NIHR Clinician Scientist Grant. The work was performed at UCL/UCLH UCLH/UCL, which received a proportion of funding from the Department of Health's NIHR Biomedical Research Centres' funding scheme.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.