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Background In this qualitative study, we aimed to obtain and synthesise the views of patients with functional neurological disorder (FND), their caregivers, and relevant healthcare professionals (HCPs) on outcome measurement in FND. Methods Semi-structured interviews were conducted with 22 FND patients, 18 caregivers and 21 HCPs, sampled purposively in the United Kingdom. Transcripts were analysed through inductive thematic analysis. Results Whilst reduction or resolution of FND symptoms were frequently mentioned as important treatment goals in all groups, this was reported by a larger proportion of caregivers and HCPs than patients. Patients most frequently hoped for improvements in mental health/well-being. Other important treatment goals were resuming work, and an increase in independence, self-management or self-efficacy. Of the 20 domains deemed relevant for outcome assessment, improvements in FND symptoms, emotional well-being, activities of daily living and quality-of-life, were mentioned most frequently. None of the participants thought that outcome assessment should be purely clinician-rated or objective; all believed that the patient’s subjective experience should be central. Nevertheless, participants in all groups acknowledged that clinician-rated or objective OMIs have added value in clinical outcome assessment. The benefits of digital outcome assessment were also mentioned by several participants. Conclusions This is the first study to capture the views of key stakeholders on outcome assessment in FND. The findings indicate that outcome measures for FND should be patient-centred, whilst also including HCP opinion. Critical domains for assessment are FND symptoms, mental health, quality-of-life and the ability to perform activities of daily living.

Functional neurological disorder (FND) can be a difficult diagnosis for patients to understand and for clinicians to explain. The postdiagnostic support that patients with other chronic neurological illnesses normally receive is often not available to patients with FND. Here, we share our experience of how to set up an FND education group, including the content, practical aspects of delivering groups and how to avoid potential pitfalls. A group education session can improve understanding of the diagnosis among patients and caregivers, reduce stigma and provide self-management advice. Such groups should be multidisciplinary and include input from service users.

ObjectivesWe aimed to identify existing outcome measures for functional neurological disorder (FND), to inform the development of recommendations and to guide future research on FND outcomes.MethodsA systematic review was conducted to identify existing FND-specific outcome measures and the most common measurement domains and measures in previous treatment studies. Searches of Embase, MEDLINE and PsycINFO were conducted between January 1965 and June 2019. The findings were discussed during two international meetings of the FND-Core Outcome Measures group.ResultsFive FND-specific measures were identified—three clinician-rated and two patient-rated—but their measurement properties have not been rigorously evaluated. No single measure was identified for use across the range of FND symptoms in adults. Across randomised controlled trials (k=40) and observational treatment studies (k=40), outcome measures most often assessed core FND symptom change. Other domains measured commonly were additional physical and psychological symptoms, life impact (ie, quality of life, disability and general functioning) and health economics/cost–utility (eg, healthcare resource use and quality-adjusted life years).ConclusionsThere are few well-validated FND-specific outcome measures. Thus, at present, we recommend that existing outcome measures, known to be reliable, valid and responsive in FND or closely related populations, are used to capture key outcome domains. Increased consistency in outcome measurement will facilitate comparison of treatment effects across FND symptom types and treatment modalities. Future work needs to more rigorously validate outcome measures used in this population.

Objectives/AimsBiopsychosocial perspectives have highlighted the multifactorial and diverse aetiology of functional neurological disorder (FND). We aimed to assess a range of potential predisposing, precipitating and perpetuating factors in FND, and to explore relationships between aetiological factors and current functioning or health-related quality- of-life (HRQoL).MethodsSeventeen participants with FND (motor symptoms and/or seizures) and 17 healthy controls (HCs) underwent an in-depth interview and completed validated questionnaires, including the Traumatic Experiences Checklist (TEC), Toronto Alexithymia Scale-20, Multiscale Dissociation Inventory, Somatoform Dissociation Questionnaire-20, Autistic Spectrum Quotient, Patient Health Questionnaire-9 and -15, Generalised Anxiety Disorder-7, Brief Illness Perception Questionnaire (B-IPQ), Short Form Survey-36 (SF-36) and the Work & Social Adjustment Scale.ResultsThe groups did not differ in sex (p=1.00) or age (p=.51). The most commonly reported FND symptom precipitants were physical activity/exertion (59%), stress/emotion (59%), sensory (47%) and fatigue (41%). Perceived causes of FND (B-IPQ) were physical (e.g., injury, illness, 65%), stress/emotions (53%), psychosocial trauma (47%) and work-related (29%). There was a trend towards higher rates of adverse life events (TEC) in the FND group compared to HCs (p=.06), and the FND group reported greater impact of events (p=.03). The most frequent adverse experiences in the FND group were: looking after parents/siblings as a child (41%), family problems (41%), parental divorce (41%), intense pain (41%), emotional neglect (41%), and sexual abuse (non-familial, 41%). The most common adverse experiences in HCs were: bereavement (35%) and parental divorce (41%). The FND group had higher scores for alexithymia (p=.002), somatoform dissociation (p<.001), aspects of psychological dissociation (disengagement p=.003, depersonalisation p=.001, derealisation p=.002, memory disturbance p=.01), anxiety (p<.001), depression (p<.001), and physical symptoms (p<.001). No significant differences were observed for autistic spectrum traits (p=.22) and some types of psychological dissociation (emotional constriction p=.38, identity disturbance p=.17). FND participants reported worse HRQoL than HCs in all SF-36 domains (p-values .01- <.001). Work/social functioning was impaired in the FND group relative to HCs (p<.001). Poorer work/social functioning was associated with higher depression scores (p=.016). Worse HRQoL in several domains was associated with higher somatoform dissociation and/or anxiety scores (p-values .044-.005). Lower general health HRQoL scores were associated with higher TEC total (p=.020) and impact (p=.011) scores.ConclusionsIndividuals with FND report diverse aetiological factors, including psychosocial, physical and environmental stressors. Alexithymia, dissociative tendencies, emotional distress, and physical symptom burden are also possible predisposing and/or perpetuating factors. Somatoform dissociation, anxiety and adverse experiences may be related to HRQoL in FND.