A survey published in the Journal of Medical Ethics looks at electroconvulsive therapy (ECT) and what information recipients recall being given.
Prof Declan McLoughlin, Research Professor of Psychiatry, Trinity College Dublin, St Patrick’s University Hospital, Dublin, Ireland, said:
“Providing patients with accurate and appropriate information about treatments is a core aspect of medical practice. The information provided must strike a realistic balance between risks and benefits and, at the same time, be conveyed in a way that is meaningful and helpful for decision-making. This can be especially challenging when people are very sick and unwell.
“Electroconvulsive therapy (ECT) is a serious treatment for serious illness. It is one of the most effective treatments in psychiatry and medicine. ECT is used worldwide because it is supported by a robust scientific evidence base.
“The topic of recalling information provided to patients and their carers about ECT is important. However, this report illustrates some of the many problems and methodological limitations of cross-sectional survey research on retrospective recall of medical experiences as well as the dangers of over-interpreting poor-quality survey data.
“While having the advantages of being relatively inexpensive and easy to do, cross-sectional surveys are non-experimental, uncontrolled, non-randomised, cannot assess causality, and are very low forms of evidence for guiding clinical practice. In contrast, the highest levels of evidence are provided by scientifically rigorous, labour-intensive, randomised controlled trials and appropriate meta-analyses of such trials.
“As the authors admit, their survey was not pre-registered. So, we have no idea of what the original research plan was, any changes made during the study process, the statistical analysis plan, etc.
“Additionally, as partially admitted by the authors, their findings are clearly limited by problems with sampling bias. How representative exactly is their sample of study participants (n= 848 ECT recipients) of all the people in the (English-speaking only) world of people who have been treated with ECT in the past 66 years (i.e. the longest interval between the survey and when the survey participant had ECT)? Let’s conservatively assume that at least 100,000 people per year were treated with ECT, i.e. like the number treated annually in the USA alone. This would theoretically mean that the survey represents the responses of only 0.0001% of the total potentially eligible study sample. This would never be deemed to be a representative sample by any acceptable metric.
“Unfortunately, this methodological error reflects a fundamental and fatal problem with the research design of the survey. It’s really important that studies invite people to participate in research only when the study results can provide usable and meaningful data – this is something that ethical review boards will consider. I think that the issues with the design of the survey described above raise genuine concerns about whether this study can provide any usable data.
“Other major methodological limitations, not acknowledged in the survey report, include the absence of any validated and reliable outcome measures in the survey questionnaire the researchers made up for the study.
“Finally, recall bias is another major and practical problem with the study. It is well established in the scientific literature that it is incredibly difficult to recall details of events that occurred many years ago, never mind many decades ago, as reported in the present survey. Even for major “flashbulb memories”, such as a national disaster, we quickly lose 25-40% of the memories formed at the time of the event. It is not at all possible for a survey to control for this major confounding factor, or for any other personal or medical events that occurred in the intervening years that could affect recall. This survey has made no attempt whatsoever to do so.”
Dr Sameer Jauhar, Clinical Associate Professor in Affective Disorders and Psychosis, Imperial College London, said:
“This is a survey of people who have received ECT, and their families. It is important that people are given evidence-based information on any medical treatment, and that this is monitored. This work is important, though in this case it is difficult to draw any valid conclusions. As the authors point out, there will be biases associated with this work, that cannot be addressed, such as recall and selection bias, and the very nature of how the survey took place. Any empirical data cannot therefore be taken at face value. What is vitally important are the qualitative aspects of people’s experiences, and this would help the field, done in a prospective fashion, with methodological rigour.
“The evidence on ECT as an effective treatment for conditions such as severe depression and catatonia is very clear, and that should not be in question. The nature of memory loss is complex-some aspects of memory improve with ECT, and others (such as autobiographical memory) can be affected in some people, and requires assiduous monitoring. The Royal College of Psychiatrists has clear guidance in this, though the field should remain vigilant in regard to this.”
Prof George Kirov, Clinical Professor, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, said:
“There are two main problems with this article that render the results unusable.
“One is the nature of sample. It is called a “convenience sample” by the authors themselves. It is hard to produce a potentially more biased sample and word “convenience” is very appropriate. The questionnaire was advertised on platforms such as X (formerly Twitter) by the main author, who is a well-recognised anti-ECT activist, with a >12,000 followers. The questionnaire was tweeted many times, and re-tweeted by a number of these followers, thus potentially reaching a substantial proportion of the people who oppose ECT. No such endorsements were made by ECT clinicians, as far as I noticed at the time. This creates an extreme bias towards users of the treatment who feel harmed by it or are opposed to it. It is not possible to even entertain the idea that the sample is in any way representative of people who receive ECT. The extreme spread of countries and years of ECT delivery (going back 1958) makes it also unlikely to produce data relevant to the present day or a particular country. The response rate of 1144, while looking impressive, is actually an extremely tiny proportion of ECT recipients, when one takes into account that the questionnaire was advertised everywhere around the world (except in Antarctica, as stated by the authors) and without a limit on the year when ECT was given. I would never approve for a student to use such a survey for a project, let alone think of a publication, as this is not a scientific approach, and the results would be meaningless.
“The second problem is the type and content of the questions. While the authors claim that the information given to patients amounts to misinformation, their questions contain inaccurate information. For example, there is a claim (a question) that people are not told that “Bilateral ECT is more likely to cause memory problems”. The following statement is actually in the current Patient Information Sheet used in the UK: “Bilateral ECT may work more quickly, while unilateral ECT has less of an effect on memory”. The claim of no evidence of long-term benefits ignores the fact that ECT is highly effective for the treatment of current episodes, but the illnesses tend to be recurrent, and patients can have further episodes in the future. They suggest that ECT does not prevent suicide or correct changes in the brain, but this is an oversimplification that does not reflect a complex and developing area of research. There is evidence that ECT does reduce the rate of suicide and there is evidence that ECT does change structures in the brain – such as increasing hippocampal volumes – and preliminary evidence of it reducing abnormal connectivity in the brain.”
‘A large exploratory survey of electroconvulsive therapy recipients, family members and friends: what information do they recall being given?’ by John Read et al. was published in Journal of Medical Ethics at 23:30 UK time on Thursday 14th August.
DOI: 10.1136/jme-2024- 110629
Declared interests
Prof Declan McLoughlin: DM has received speaker’s honoraria from MECTA, Otsuka, and Janssen, and an honorarium from Janssen for participating in an esketamine advisory board meeting. He has received funding for ECT, therapeutic brain stimulation and depression-related research from the following organisations: NHS Health and Technology Assessment Programme, Special Trustees for St Thomas’s and Guy’s Hospitals (UK), National Alliance for Research on Schizophrenia and Depression (NARSAD, USA), Health Research Board (HRB, Ireland).
Dr Sameer Jauhar: Dr Jauhar reported receiving honoraria for talks and advisory boards from Sunovion, Lundbeck, Janssen, Otsuka, Recordati, and Angelini; research funding from Lundbeck; and being on the expert advisory panel for the National Institute for Health and Care Excellence (NICE).
Prof George Kirov: George Kirov is the Lead psychiatrist in the ECT Clinic in Cardiff. He is a member of the Royal College of Psychiatrists Committee on ECT and Related Treatments. He has published and receives royalties for two books on ECT: “Shocked” and “Waves of Hope”.