TY - JOUR
T1 - International online survey of 1048 individuals with functional neurological disorder
AU - Butler, Matthew
AU - Shipston-Sharman, Oliver
AU - Seynaeve, Mathieu
AU - Bao, Jianan
AU - Pick, Susannah
AU - Bradley-Westguard, Abigail
AU - Ilola, Eveliina
AU - Mildon, Bridget
AU - Golder, Dawn
AU - Rucker, James
AU - Stone, Jon
AU - Nicholson, Timothy
N1 - Funding Information:
This report is independent research supported by the UK National Institute for Health Research (NIHR) via Clinician Scientist Fellowship Awards for both JR (CS-2017-17-007) and TN (CS-2014-14-016). JR is an Honorary Consultant at the South London and Maudsley NHS Foundation Trust (NHS UK) and a Consultant at Sapphire Medical Clinics (Private, UK). King's College London receives grant funding from COMPASS Pathways and Beckley PsyTech to undertake phase 1 and phase 2 trials with psilocybin and related compounds where JR is an investigator or principal investigator. MB is an NIHR Academic Clinical Fellow (ACF-2019-17-008). JB is an NIHR Academic Clinical Fellow. This study presents independent research part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. JS is supported by a National Research Scotland Career Fellowship. The authors would like to express their particular thanks to all respondents to the survey. They would also like to express their gratitude to the charities FND Hope, FND Action and FND Friends in kindly assisting with the dissemination of the survey.
Funding Information:
This report is independent research supported by the UK National Institute for Health Research (NIHR) via Clinician Scientist Fellowship Awards for both JR (CS‐2017‐17‐007) and TN (CS‐2014‐14‐016). JR is an Honorary Consultant at the South London and Maudsley NHS Foundation Trust (NHS UK) and a Consultant at Sapphire Medical Clinics (Private, UK). King's College London receives grant funding from COMPASS Pathways and Beckley PsyTech to undertake phase 1 and phase 2 trials with psilocybin and related compounds where JR is an investigator or principal investigator. MB is an NIHR Academic Clinical Fellow (ACF‐2019‐17‐008). JB is an NIHR Academic Clinical Fellow. This study presents independent research part‐funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. JS is supported by a National Research Scotland Career Fellowship.
Publisher Copyright:
© 2021 European Academy of Neurology
PY - 2021/11
Y1 - 2021/11
N2 - Background and purpose: Functional neurological disorder (FND) is common, and symptoms can be severe. There have been no international large-scale studies of patient experiences of FND. Methods: A patient questionnaire was created to assess FND patient characteristics, symptom comorbidities and illness perceptions. Respondents were recruited internationally through an open access questionnaire via social media and patient groups over a month-long period. Results: In total, 1048 respondents from 16 countries participated. Mean age was 42 years (86% female). Median FND symptom duration was 5 years, and median time from first symptom to diagnosis was 2 years. Mean number of current symptoms (core FND and associated) was 9.9. Many respondents had associated symptoms, for example fatigue (93%), memory difficulties (80%) and headache (70%). Self-reported psychiatric comorbidities were relatively common (depression, 43%; anxiety, 51%; panic, 20%; and post-traumatic stress disorder, 22%). Most respondents reported that FND had multiple causes, including physical and psychological. Conclusions: This large survey adds further evidence that people with FND typically have high levels of multiple symptom comorbidity with resultant distress. It also supports the notion that associated physical symptoms are of particular clinical significance in FND patients. Dualistic ideas of FND were not supported by respondents, who generally preferred to conceptualize the disorder as one at the interface of mind and brain. The need for a broad approach to this poorly served patient group is highlighted. Potential selection and response biases due to distribution of the survey online, mostly via FND patient groups, are a key limitation.
AB - Background and purpose: Functional neurological disorder (FND) is common, and symptoms can be severe. There have been no international large-scale studies of patient experiences of FND. Methods: A patient questionnaire was created to assess FND patient characteristics, symptom comorbidities and illness perceptions. Respondents were recruited internationally through an open access questionnaire via social media and patient groups over a month-long period. Results: In total, 1048 respondents from 16 countries participated. Mean age was 42 years (86% female). Median FND symptom duration was 5 years, and median time from first symptom to diagnosis was 2 years. Mean number of current symptoms (core FND and associated) was 9.9. Many respondents had associated symptoms, for example fatigue (93%), memory difficulties (80%) and headache (70%). Self-reported psychiatric comorbidities were relatively common (depression, 43%; anxiety, 51%; panic, 20%; and post-traumatic stress disorder, 22%). Most respondents reported that FND had multiple causes, including physical and psychological. Conclusions: This large survey adds further evidence that people with FND typically have high levels of multiple symptom comorbidity with resultant distress. It also supports the notion that associated physical symptoms are of particular clinical significance in FND patients. Dualistic ideas of FND were not supported by respondents, who generally preferred to conceptualize the disorder as one at the interface of mind and brain. The need for a broad approach to this poorly served patient group is highlighted. Potential selection and response biases due to distribution of the survey online, mostly via FND patient groups, are a key limitation.
UR - http://www.scopus.com/inward/record.url?scp=85111855830&partnerID=8YFLogxK
U2 - 10.1111/ene.15018
DO - 10.1111/ene.15018
M3 - Article
C2 - 34245646
SN - 1351-5101
VL - 28
SP - 3591
EP - 3602
JO - European Journal of Neurology
JF - European Journal of Neurology
IS - 11
ER -