Your browser doesn't support javascript.
loading
Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions.
Bailey, Cate; Agrawal, Niruj; Cope, Sarah; Proctor, Barnaby; Mildon, Bridget; Butler, Matt; Holt, Kate; Edwards, Mark; Poole, Norman; Nicholson, Timothy R.
Afiliación
  • Bailey C; Neuropsychiatry Research and Education Group, Institute of Psychiatry Psychology & Neuroscience, King's College London, London, UK.
  • Agrawal N; East London NHS Foundation Trust, London, UK.
  • Cope S; Neuropsychiatry Service, South West London and St George's Mental Health NHS Trust, London, UK.
  • Proctor B; Atkinson Morley Regional Neurosciences Centre, St George's University Hospitals NHS Foundation Trust, London, UK.
  • Mildon B; Neuropsychiatry Service, South West London and St George's Mental Health NHS Trust, London, UK.
  • Butler M; Neuropsychiatry Service, South West London and St George's Mental Health NHS Trust, London, UK.
  • Holt K; FND Hope International, Salmon, Idaho, USA.
  • Edwards M; Neuropsychiatry Research and Education Group, Institute of Psychiatry Psychology & Neuroscience, King's College London, London, UK.
  • Poole N; Atkinson Morley Regional Neurosciences Centre, St George's University Hospitals NHS Foundation Trust, London, UK.
  • Nicholson TR; Wolfson Neurorehabilitation Centre, Queen Mary's Hospital, London, UK.
BMJ Neurol Open ; 6(1): e000633, 2024.
Article en En | MEDLINE | ID: mdl-38860228
ABSTRACT

Background:

A 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.

Methods:

Questionnaires 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.

Results:

166 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.

Conclusion:

Multidisciplinary 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.
Palabras clave

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: BMJ Neurol Open Año: 2024 Tipo del documento: Article País de afiliación: Reino Unido Pais de publicación: Reino Unido

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: BMJ Neurol Open Año: 2024 Tipo del documento: Article País de afiliación: Reino Unido Pais de publicación: Reino Unido