We are very grateful to the members and particularly the chairpersons of the TSC and DMEC for their invaluable advice and support throughout the study.
Trial Steering Committee members
Professor Christopher Williams (chairperson), Professor Garry Barton, Professor Steve Jones, Professor Edward J Watkins, Professor Adam Zeman and our service user representatives (Ms Lorna Sprague and another member who wishes to remain anonymous).
Data Monitoring and Ethics Committee members
Professor Karina Lovell (chairperson), Dr John Paul Leach, Professor Tony Marson and Dr Ruth Pickering.
Staff at collaborating hospitals
Anne-Mary Abe, Naghme Adab, Niruj Agrawal, Holger Allroggen, Debie Alvares, Thomasin Andrews, Heather Angus-Leppan, Julia Aram, Richard Armstrong, Antonio Atalaia, Manny Bagary, Masha Bennett, Tamsin Black, Daniel Blackburn, Mayur Bodani, Mark Broadhurst, Elisa Bruno, Mary Buckley, Richard Chalmers, Sam Chong, Muhammad Chowdhury, Fahmida Chowdury, Katia Cikurel, Giovanni Cocco, Hannah Cock, Sarah Cooper, Sarah Cope, Amy Copping, Robert Delamont, Gary Dennis, Christopher Derry, Rebecca Devlin, Jon M Dickson, Beate Diehl, Clare Donnelly, Susan Duncan, Mark Edwards, Shan Ellawella, Cathy Ellis, Jennifer Elvish, Robert Elwes, Sandra Eriemo, Sofia Eriksson, Kerry Evans, Rafey Faruqui, Gerald Finnerty, Lorena Flores, Nick Firth, Robert Fung, Paula Gardiner, Christopher Graham, Zayn Green-Thompson, Richard Grunewald, Robert Hadden, Khalid Hamandi, Rachel Harding, Sreedharan Harikrishnan, Simon Harrison, Helen Healy, Channa Hewamadduma, Stephen Higgins, Stephen Howell, Heloise Hunt, Abrar Hussain, Motchila Innocente, Graham Jensch, Michael Johnson, Joanna Karlsson, Andrew Kelso, Steven Kemp, Jonathan Knibb, Norman Kock, Michael Koutroumanidis, Stjepana Kovac, Guru Kumar, Andy Laker, Guy Leschziner, Rebecca Liu, Dora Lozsadi, Lea Ludwig, Bridget MacDonald, Lindsey MacGregor, Melissa Maguire, Mark Manford, Davide Martino, Dougall McCorry, Kenneth McKeown, Fiona McKevitt, Anna Meadow, Shafqat Memon, Ana Miorelli, Clinton Mitchell, Tejal N Mitchell, Virginia Moffitt, Nicholas Moran, Aimee Morgan-Boon, John Moriarty, Marco Mula, Nandini Mullatti, Lina Nashef, Daniel O’Hara, Louise Oakley, Suzanne O’Sullivan, Lisa Page, Darshna Patel, Panayiota Petrochilos, Danielle Phoenix, William Pickerell, Thirza Pieters, Gary Price, David Protheroe, Patrick Pullicino, Jennifer Quirk, Sanjeev Rajakulendran, Basil Ridha, Claire Rockliffe-Fidler, Carrie Rowbottom, Fergus Rugg-Gunn, Amrit Sachar, Romi Saha, Gerard Saldanha, Shanika Samarasekera, Violeta Sanchez Sanchez, Alastair Santhouse, Karen Scholes, Abhijeeth Shetty, Paul Shotbolt, Rachel Simkiss, Jasvinder Singh, Jananee Sivagnanasundaram, Sean Slaght, Philip Smith, Dilraj Sokhi, Biba Stanton, Liya Suvorova, Tayyeb Tahir, Ruth Taylor, Lara Teare, Lorenza Tedesco, James Teo, John Thorpe, Laura Toplis, Myrto Tsakopoulou, Ivona Tylova, Tracey Vick, Jane Vinnicombe, Matthew Walker, Cathy Walsh, Gillian Watson, Thomas Webb, Tim Wehner, Killian Welch, Kirstin Weyrich, Margaret Whittaker, Mirdhu Wickremaratchi, Louise Wicks and Mahinda Yogarajah.
Cognitive–behavioural therapy fidelity raters
Alison Griffiths and Sarah Lack.
Contributions of authors
Laura H Goldstein (https://orcid.org/0000-0001-9387-3035) (Professor of Clinical Neuropsychology) was the chief investigator, led the trial at all stages and led the drafting of the full report.
Emily J Robinson (https://orcid.org/0000-0002-6692-5415) (Research Fellow in Medical Statistics) wrote the statistical analysis plan and designed and conducted the analyses of the clinical quantitative data.
Izabela Pilecka (https://orcid.org/0000-0001-7350-4873) (Research Associate) was the trial manager who managed the later stages of the study.
Iain Perdue (https://orcid.org/0000-0002-8078-8146) (Research Associate) was the trial manager who oversaw most aspects of the conduct of the trial, supporting sites and staff on a day-to-day basis.
Iris Mosweu (https://orcid.org/0000-0001-6797-2478) (Research Associate, Health Economics) undertook the main health economics analysis and contributed to the drafting of the health economics results.
Julie Read (https://orcid.org/0000-0003-4450-4529) (Research Worker) contributed to data collection and the conduct, analysis and reporting of qualitative work.
Harriet Jordan (https://orcid.org/0000-0002-7268-7310) (Research Worker) contributed to data collection and the conduct, analysis and reporting of qualitative work.
Matthew Wilkinson (https://orcid.org/0000-0002-7309-2909) (Clinical Psychologist) contributed to data collection and the conduct, analysis and reporting of qualitative work.
Gregg Rawlings (https://orcid.org/0000-0003-4962-3551) (Trainee Clinical Psychologist) contributed to data collection, analysis and reporting of the neurologists’ survey.
Sarah J Feehan (https://orcid.org/0000-0003-3986-2698) (Research Worker) contributed to data collection and the conduct, analysis and reporting of qualitative work.
Hannah Callaghan (https://orcid.org/0000-0002-4864-6666) (Research Worker) contributed to data collection and the drafting of the report.
Elana Day (https://orcid.org/0000-0002-7840-2320) (Research Worker) contributed to analysis and reporting of qualitative work and other aspects of the report.
James Purnell (https://orcid.org/0000-0003-2448-8824) (Administrator) contributed to analysis and reporting of qualitative work and other aspects of the report.
Maria Baldellou Lopez (https://orcid.org/0000-0003-0001-2573) (Administrator) contributed to the drafting of the report.
Alice Brockington (https://orcid.org/0000-0001-8469-9231) (Consultant in Neurology) undertook blind ratings of adverse events.
Christine Burness (https://orcid.org/0000-0001-9062-0630) (Consultant in Neurology) undertook blind ratings of adverse events.
Norman A Poole (https://orcid.org/0000-0002-3187-6430) (Consultant in Neuropsychiatry) undertook blind ratings of adverse events.
Carole Eastwood (https://orcid.org/0000-0002-8173-0376) (PPI representative) was involved in the conception, design and conduct of the study, and advised on issues relevant to service users, including dissemination.
Michele Moore (https://orcid.org/0000-0002-9686-1504) (PPI representative) was involved in the conception, design and conduct of the study, and advised on issues relevant to service users, including dissemination.
John DC Mellers (https://orcid.org/0000-0002-1253-2835) (Consultant Neuropsychiatrist) was a co-applicant and was involved in the conception, design and conduct of the study.
Jon Stone (https://orcid.org/0000-0001-9829-8092) (Professor of Neurology) was a co-applicant and was involved in the conception, design and conduct of the study.
Alan Carson (https://orcid.org/0000-0002-7425-0964) (Professor of Neuropsychiatry) was a co-applicant and was involved in the conception, design and conduct of the study.
Nick Medford (https://orcid.org/0000-0001-6739-6001) (Consultant Neuropsychiatrist) was a co-applicant and was involved in the conception, design and conduct of the study.
Markus Reuber (https://orcid.org/0000-0002-4104-6705) (Professor of Neurology) was a co-applicant and was involved in the conception, design and conduct of the study.
Paul McCrone (https://orcid.org/0000-0001-7001-4502) (Professor of Health Economics) was a co-applicant and was involved in the conception, design and conduct of the study. He also had overall responsibility for the health economics component and its analysis.
Joanna Murray (https://orcid.org/0000-0002-7348-7505) (Senior Lecturer) was a co-applicant and was involved in the conception, design and conduct of the study (especially the qualitative studies).
Mark P Richardson (https://orcid.org/0000-0001-8925-3140) (Paul Getty III Professor of Epilepsy) was a co-applicant and was involved in the conception, design and conduct of the study.
Sabine Landau (https://orcid.org/0000-0002-3615-8075) (Professor of Biostatistics) was a co-applicant, was involved in the conception, design and conduct of the study and supervised the clinical quantitative analyses.
Trudie Chalder (https://orcid.org/0000-0003-0775-1045) (Professor of Cognitive Behavioural Psychotherapy) was a co-applicant, was involved in the conception, design and conduct of the study, developed the cognitive–behavioural intervention and oversaw the manual writing, training and supervision of therapists.
Publications
Goldstein LH, Mellers JDC, Landau, S, Stone J, Carson A, Medford N, et al. Cognitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic Seizures (CODES): a multicentre randomised controlled trial protocol. BMC Neurol 2015;15:98.
Robinson EJ, Goldstein LH, McCrone P, Perdue I, Chalder T, Mellers JDC, et al. Cognitive behavioural therapy versus standardised medical care for adults with dissociative non-epileptic seizures (CODES): statistical and economic analysis plan for a randomised controlled trial. Trials 2017;18:258.
Goldstein LH, Robinson EJ, Reuber M, Chalder T, Callaghan H, Eastwood C, Landau S, et al. Characteristics of 698 patients with dissociative seizures: a UK multicenter study. Epilepsia 2019;60:2182–93.
Jordan H, Feehan, S, Perdue I, Murray J, Goldstein LH. Exploring psychiatrists’ perspectives of working with patients with dissociative seizures in the UK healthcare system as part of the CODES trial – a qualitative study. BMJ Open 2019;9:e026493.
Rawlings G, Perdue I, Goldstein LH, Carson AJ, Stone J, Reuber M. Neurologists’ experiences of participating in the CODES study – a multicentre randomised controlled trial comparing cognitive behavioural therapy vs standardised medical care for dissociative seizures. Seizure: Eur J Epilepsy 2019;71:8–12.
Goldstein LH, Robinson EJ, Mellers JDC, Stone J, Carson A, Chalder T, et al. Psychological and demographic characteristics of 368 patients with dissociative seizures: data from the CODES cohort. Psychol Med 2020;1–13.
Goldstein LH, Robinson EJ, Mellers JDC, Stone J, Carson A, Reuber M, et al. Cognitive behavioural therapy for adults with dissociative seizures (CODES): a pragmatic, multicentre, randomised controlled trial. Lancet Psychiatry 2020;7:491–505.
Read J, Jordan H, Perdue I, Purnell J, Murray J, Chalder T, et al. The experience of trial participation, treatment approaches and perceptions of recovery among participants with dissociative seizures within the CODES randomised controlled trial: a qualitative study. Epilepsy Behav 2020;111:107230.
Stone J, Callaghan H, Robinson EJ, Carson A, Reuber M, Chalder T, et al. Predicting first attendance at psychiatry appointments in patients with dissociative seizures. Seizure: Eur J Epilepsy 2020;74:93–8.
Wilkinson M, Day E, Purnell J, Pilecka I, Perdue I, Murray J, et al. The experiences of therapists providing cognitive behavioural therapy (CBT) for dissociative seizures in the CODES randomized controlled trial: a qualitative study. Epilepsy Behav 2020;105:106943.
Published conference abstracts
Goldstein LH, Chalder T, Carson AJ, Landau S, McCrone P, Magill N, et al. COgnitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic seizures (CODES): an RCT protocol. J Neurol Neurosurg Psychiatry 2015;86(9). (Conference: British Neuropsychiatry Association, London, February 2015.)
Goldstein LH, Chalder T, Carson AJ, Landau S, McCrone P, Medford N, et al. COgnitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic Seizures (CODES): progress in a randomised controlled trial. Epilepsia 2016;57:23. (Conference: 12th European Congress on Epileptology, Prague, September 2016.)
Goldstein LH, Chalder T, Carson AJ, Landau S, McCrone P, Medford N, et al. COgnitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic seizures (CODES): update on a pragmatic randomised controlled trial. J Neurol Neurosurg Psychiatry 2017;88:A26. (Conference: British Neuropsychiatry Association, London, February 2017.)
Goldstein LH, Chalder T, Carson AJ, Landau S, McCrone P, Medford N, et al. COgnitive behavioural therapy vs. standardised medical care for adults with Dissociative non-Epileptic Seizures (CODES): baseline characteristics of participants in a randomised controlled trial. Epilepsia 2018;59:S239. (Conference: 13th European Congress on Epileptology, Vienna, August 2018.)
Protocol available
Goldstein LH, Mellers JDC, Landau, S, Stone J, Carson A, Medford N, et al. COgnitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic Seizures (CODES): a multicentre randomised controlled trial protocol. BMC Neurol 2015;15:98.
See also update (statistical analysis plan)
Robinson EJ, Goldstein LH, McCrone P, Perdue I, Chalder T, Mellers JDC, et al. COgnitive behavioural therapy versus standardised medical care for adults with Dissociative non-Epileptic seizures (CODES): statistical and economic analysis plan for a randomised controlled trial. Trials 2017;18:258.
Data-sharing statement
In the first instance all data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following this.
Patient data
This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data are used. #datasaveslives You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation.
Disclaimers
This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health and Social Care.