Digital healthcare for the management of functional neurological disorders

09:00-09:10


Welcome by the Royal Society and lead organisers


09:10-09:40


Keynote: FND: unmet needs in digital health

Jon will review the past present and future of FND as it relates to unmet needs and how digital forms of health might improve them. He will especially comment on diagnostic precision, assessment of comorbidity, outcome measurement, access to treatment, rehabilitation and novel treatment.

Professor John Stone, University of Edinburgh, UK


Professor John Stone, University of Edinburgh, UK


09:40-10:00


Digital Media and FND: The patient perspective

As a charity, FND Action recognise the vital role media plays in communication, education, and support. For those diagnosed with FND, digital platforms offer unique opportunities to connect with others and access valuable resources. Online communities allow individuals to share experiences and coping strategies, helping to combat feelings of isolation. Educational resources can enhance understanding of FND, empowering individuals in their management and recovery. Whilst there are benefits, there are also drawbacks that negatively impact on this community, some of which are progressively getting worse and of great concern. This presentation explores how digital media is utilised and its outcomes, through the eyes of the patient.

Ms Kim Hearne, FND Action, UK


Ms Kim Hearne, FND Action, UK


10:00-10:20


Fatigue in health and disease

Fatigue is a common experience, yet for many clinical populations fatigue is so prevalent and persistent that patients rate it as their worst or most debilitating symptom.  This is true for individuals with neurological injury or disease, and it is also true for individuals whose illness has not yet been fully explained by medical research such as individuals with Functional Neurological Disorders (FND).  However, despite its prevalence, fatigue remains poorly understood both because of imprecise definitions of fatigue and because of poor instruments to assess it. In this talk, Dr Wylie will discuss the work he has done to better understand cognitive fatigue in healthy individuals as well as in US Veterans with Gulf War Illness (which has many similarities to Chronic Fatigue Syndrome) and in individuals who have Post-Acute Sequelae of SARS CoV-2 infection (PASC, or ‘long COVID’).  This work has shown fatigue-related activation in a specific set of brain regions including the caudate nucleus of the basal ganglia, the thalamus, the ventro-medial prefrontal cortex, the insula and the dorso-lateral prefrontal cortex.  Furthermore, his work suggests that fatigue may be a signal the brain generates when the balance between effort and reward shifts such that the reward received for performing a given task no longer merits the effort required.

Glenn R Wylie, Rocco Ortensio Neuroimaging Center at Kessler Foundation, USA


Glenn R Wylie, Rocco Ortensio Neuroimaging Center at Kessler Foundation, USA


10:20-10:40


Unmet needs of patients with functional / dissociative seizures

As a group, patients with functional / dissociative seizures (FDS) are characterised by high levels of medical and psychiatric pathology often associated with disability and distress and markedly increased rates of premature death. This talk will explore the increasing gap between recognised needs and evidence-based interventions on the one hand and available diagnostic and treatment services on the other. It will highlight the urgent need for improvements and innovative solutions at a time (including a greater and more efficient use of technology) when resources for new service developments are limited.

Professor Markus Reuber, University of Sheffield, UK


Professor Markus Reuber, University of Sheffield, UK


10:40-11:00


Break


11:00-11:20


Remote monitoring of functional neurological symptoms in everyday life: identifying antecedents and correlates

Remote monitoring technologies (RMT) might be optimal tools for tracking variations in, and identifying mechanisms underlying, functional neurological symptoms (FNS). Ecological momentary assessment (EMA), for example, can illuminate moment-to-moment changes in symptoms and related states, with high temporal resolution and ecological validity. Wearable devices can objectively capture physiological signals that might predict or correlate with alterations in FNS, with minimal patient burden. However, few studies have harnessed the potential of RMT in FND to date.
I present data from a pilot study examining the feasibility and acceptability of a novel RMT protocol, which aimed to identify antecedents and correlates of FNS in real-world settings. The study combined EMA with Fitbit Charge 5 wearables to monitor subjective FNS and other physical and mental states, as well as objective physiological variables of potential relevance (heartrate, electrodermal activity, sleep, physical activity). Multilevel models were generated to examine variables correlated with FNS severity in concurrent and time-lagged analyses.

EMA completion rates were high (≥80%). Across the week, FNS participants reported significantly elevated pain, arousal, fatigue, negative affect, dissociation, salient events, and sleep duration, relative to HC. The FNS sample also exhibited elevated objective sleep duration, sleep disturbance, and resting heartrate. FNS severity correlated significantly with affect, salient events, subjective arousal, pain, fatigue, and sleep disturbance, at the daily and/ or momentary level. Salient events and negative affect predicted momentary FNS severity in time-lagged analyses.
RMT are feasible and acceptable tools for investigating FNS in naturalistic settings. Larger-scale, longer-term RMT studies are needed in FND.

Dr Susannah Pick, King's College London, UK


Dr Susannah Pick, King’s College London, UK


11:20-11:40


Digital healthcare for the management of FND: unmet needs in physiotherapy

Digital healthcare and technology have the potential to enhance physiotherapy practice, improve the patient experience and outcomes from treatment. Digital healthcare may provide effective solutions to current challenges including developing and validating assessment tools and outcome measurement, enhancing interventions with technology such as virtual reality and biofeedback, and monitoring function to guide progression and predict setbacks. Digital healthcare may also prove to be useful where we lack effective treatments, for example treatment of functional sensory loss. One of the greatest challenges facing people with FND is an inability to access treatment and long waiting times for specialist services. Digital technology may provide solutions to improve the efficiency of treatment resources. However, we should embrace technology with caution. Digital healthcare may not suit all people and we risk excluding some vulnerable groups. There are risks associated with replacing tried and tested treatment will less effective novel approaches, especially if market pressures drive changes. To ensure continued progression of physiotherapy and rehabilitation, we must take an open minded yet considered approach to digital healthcare. Patients and service users should be involved in all stages of development, testing and implementation.

Dr Glenn Nielsen, St George's University of London, UK


Dr Glenn Nielsen, St George’s University of London, UK


11:40-12:30


Discussion: Identify unmet needs in digital healthcare for individuals with functional neurological disorder



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