Work difficulties, work restrictions, and disability benefits in people with functional seizures: A survey study

Woodward, Jared; Asadi‐Pooya, Ali A.; Mildon, Bridget; Tolchin, Benjamin

doi:10.1016/j.ebr.2023.100610

Cited by 2 publications

(3 citation statements)

References 18 publications

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“…A global survey conducted by FND Hope found that 88% of participants reported work difficulties including performance issues, accidents or symptom exacerbation. 36 There is increasing awareness of the need for occupational therapy within multidisciplinary management of FND. 8 37 Our findings and existing literature suggest people with FND need advice on negotiating reasonable adjustments to function optimally and mitigate financial effects of their condition, including accessing benefits if appropriate.…”

Section: Discussionmentioning

confidence: 99%

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Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions

Bailey,

Agrawal,

Cope

et al. 2024

BMJ Neurol Open

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BackgroundA critical first step in managing functional neurological disorder (FND) is a positive diagnosis and clear explanation using an understandable illness model. Multidisciplinary group education sessions are one way to achieve this, with some evidence they improve understanding, confidence in diagnosis and outcomes with further treatment. In many conditions, illness perceptions and stigma affect distress, functioning, quality of life and engagement. Exploring relationships between these factors could lead to deeper understanding of the impact of education.MethodsQuestionnaires assessing illness perceptions, quality of life, mood, anxiety, comorbidities, treatment engagement and stigma (both experienced and anticipated) were completed before, immediately and 1 month after a multidisciplinary online group education session for FND at a regional neurosciences centre. Free-text data on causal attributions and needs were also collected.Results166 patients attended online education sessions from January 2022 to July 2023; 61 (37%) completed presession surveys, 42 (25%) completed postsession and 35 (21%) completed 1 month postsession surveys. Patients reported multiple comorbidities, poor quality of life, functioning and high levels of stigma. Illness perception scores indicated FND as threatening, mysterious and unpredictable, with low personal or treatment control over symptoms. Illness coherence/understanding (mean difference 2.27, p<0.01, 95% CI 1.22 to 4.23) and engagement (mean difference 2.42, p<0.01, 95% CI 0.46 to 4.36) increased after the session. There were no significant changes in stigma, distress, sense of control or anticipated discrimination. Free-text analysis revealed stress and trauma as the most common causal attributions, followed by physical illnesses. Patients requested personalised formulations, practical disability advice, help with explaining the condition to others (eg, employers), peer support and treatment.ConclusionMultidisciplinary group FND education sessions potentially improve patient understanding and engagement. Clinicians should consider the possible benefits of personalised formulations and linking to practical and peer support. Further work assessing illness perceptions is needed, such as adapting measures for FND.

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Section: Discussionmentioning

confidence: 99%

“…8 37 Our findings and existing literature suggest people with FND need advice on negotiating reasonable adjustments to function optimally and mitigate financial effects of their condition, including accessing benefits if appropriate. 36 …”

Section: Discussionmentioning

confidence: 99%

Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions

Bailey,

Agrawal,

Cope

et al. 2024

BMJ Neurol Open

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“…Overall, inspection of our data does not support others’ suggestions that our treatment did not sustainably reduce DS frequency. 25 It is possible though that extending therapy time beyond 12 sessions may have been additionally beneficial in continuing to assist participants practice and apply the DS-control techniques, as well as other therapeutic strategies, particularly given the complexity of the participants. 10 22 …”

Section: What We Did and What We Foundmentioning

confidence: 99%

Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies

Goldstein,

Stone,

Reuber

et al. 2024

BMJ Neurol Open

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The COgnitive behavioural therapy versus standardised medical care for adults with Dissociative non-Epileptic Seizures multicentre randomised controlled trial is the largest, fully-powered study to test the clinical and cost-effectiveness of a psychotherapeutic intervention in this population. We also explored predictors or moderators of outcomes and investigated mechanisms of change in therapy. In this current review of findings, we discuss issues related to the design of the trial and consider the study’s nested qualitative studies which were undertaken not only to shed light on the original research questions but to provide insights and recommendations for other researchers in the field of functional neurological disorder. Finally, we consider issues relating to the possible clinical application of our study findings.

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Work difficulties, work restrictions, and disability benefits in people with functional seizures: A survey study

Cited by 2 publications

References 18 publications

Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions

Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions

Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies

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