BMJ  2003;326:1363 (21 June), doi:10.1136/bmj.326.7403.1363

Paper

Patients' perspectives on electroconvulsive therapy: systematic review

¹ Service User Research Enterprise, PO34, Institute of Psychiatry, De Crespigny Park, London SE5 8AF, ² Department of Psychology, Institute of Psychiatry, ³ Health Services Research Department, Institute of Psychiatry

Abstract

Objective To ascertain patients' views on the benefits of and possible memory loss from electroconvulsive therapy.

Design Descriptive systematic review.

Data sources Psychinfo, Medline, Web of Science, and Social Science Citation Index databases, and bibliographies.

Study selection Articles with patients' views after treatment with electroconvulsive therapy.

Data extraction 26 studies carried out by clinicians and nine reports of work undertaken by patients or with the collaboration of patients were identified; 16 studies investigated the perceived benefit of electroconvulsive therapy and seven met criteria for investigating memory loss.

Data synthesis The studies showed heterogeneity. The methods used were associated with levels of perceived benefit. At least one third of patients reported persistent memory loss.

Conclusions The current statement for patients from the Royal College of Psychiatrists that over 80% of patients are satisfied with electroconvulsive therapy and that memory loss is not clinically important is unfounded.

Introduction

Over 11 000 patients receive electroconvulsive therapy in England annually,¹ and the Royal College of Psychiatrists' fact sheet states that more than eight out of 10 depressed patients who receive it respond well.² "Electroconvulsive therapy is the most effective treatment for severe depression. "People... report that it makes them feel `like themselves again' or that `life is worth living.'"² In the 1980s, reports concluded that patients found treatment beneficial and were satisfied with it. This is currently opposed by individual patients and groups.^{3 4}

Patients' perceptions of benefit are likely to be based on broader considerations than just the relief of symptoms. They may take into account the amount and length of time symptoms are relieved (clinical benefit) as well as any side effects, such as memory loss. The Royal College of Psychiatrists' fact sheet states that "as far as we know, electroconvulsive therapy does not have any long term effects on your memory or intelligence."² Some patients, however, do report severe and longlasting memory losses after electroconvulsive therapy, and these will influence decisions on the risks and benefits from treatment. We aimed to ascertain patients' attitudes on the perceived benefit of treatment, as distinct from clinically rated outcome, and reported memory loss after treatment.

Methods

We searched relevant databases for papers and reports of patients' views on treatment with electroconvulsive therapy (see bmj.com for search terms). Articles were excluded that concerned lay or professional opinion, children or adolescents, or where not all the patients had received treatment.

Of the 27 papers identified, 26 were authored by academics or researchers and conducted in psychiatric facilities. Nine reports were written either by patients or in collaboration with them. The work of Communicate, the user group at the Maudsley hospital, is awaiting publication, but we had access to its raw data.

We calculated the proportion of patients with positive responses to questions on effectiveness of treatment and the 95% confidence intervals. Positive responses were defined as an affirmative response to the statements "electroconvulsive therapy is helpful" or "I would have electroconvulsive therapy again." A Forrest plot was produced on the raw (proportion) scale as to whether electroconvulsive therapy was considered helpful.

The research studies were rated on four methodological variables. Firstly, we considered the interval between treatment and interview, because the benefits of treatment may be short lived and side effects only apparent later. Secondly, we considered the number of questions, as a few brief questions are likely to produce less engagement than a more exploratory list of questions. Thirdly, we considered the complexity of the interview, because with simple response options there was less scope for patients to express their opinions whereas multiple choice questions or semistructured interviews allowed more complex opinions to be recorded. Finally, we considered the setting of the interview and the status of the patient, because patients are more likely to be critical when interviewed by a fellow patient in a neutral setting.

Logit models were fitted to assess associations between positive responses and methodological characteristics and the distinction between clinical and patient studies.

Results

In 16 studies, patients were asked if they found electroconvulsive therapy helpful and in 12 studies they were asked if they would have the treatment again (see bmj.com for details). The level of positive responses varied widely between studies (tests for heterogeneity: ²=370, P < 0.001 for treatment helpful, ²=256, P < 0.001 for would have treatment again). We grouped the patient led and collaborative studies together, which tended to report the lowest levels of positive responses; there was, however, an overlap in the confidence intervals (figure).

View larger version (25K): [in this window] [in a new window]   Proportions of patients who would find electroconvulsive therapy helpful, by study. Lines indicate approximate 95% confidence intervals; size of box indicates precision. *Patient study

 

Methodological variables
The number of questions, complexity of the interviews, and the interval before interview were intercorrelated (between number of questions and both the other variables r=0.54, between interval and complexity r=0.75). The clinical studies tended to use fewer questions, less complex schedules, and a shorter interval, although the difference in complexity was not significant.

Studies where the interviews were conducted soon after treatment, in hospital settings, by the treating doctor, were more likely to report positive views of electroconvulsive therapy (table). Studies with low complexity schedules, few questions, and a short interval were also associated with high perceived benefit. In the case of treatment considered helpful there was a clear hierarchy in setting, as coded from studies of inpatients (coded 1) to studies based in the community (coded 5).

View this table: [in this window] [in a new window]   Associations between positive responses and methodological variables of patients' responses to electroconvulsive therapy. Values are odds ratios (95% confidence intervals) unless stated otherwise

 

When the analyses were repeated for the clinical studies alone, the effects were in the same direction and of a similar magnitude. Because of reduced sample sizes, fewer associations were significant. Within clinical studies, the number of questions remained significantly associated with treatment considered helpful, and complexity of the interview and interval between treatment and interview were associated with whether the patient would have treatment again. In multivariate models, only setting remained significant.

Persistent memory loss
Of the 35 studies, 20 considered memory loss as a consequence of electroconvulsive therapy. Thirteen were excluded because data were not given or the interval between treatment and questions about memory loss was less than six months.

The rate of reported persistent memory loss varied between 29% and 55%, but, unlike levels of perceived benefit, the rate did not seem to depend on whether studies were clinical or patient based, with relatively high levels being reported by both types of study.

Discussion

The methods used to elicit patients' views on electroconvulsive therapy influence the reporting of perceived benefit and willingness to repeat treatment. Patient led studies reported lower rates of perceived benefit than clinical studies. This might be attributed to a selection bias, with patient studies only selecting people who were antagonistic to treatment. The study by Communicate, the user group at the Maudsley Hospital, is, however, a prospective one, where the interview schedule was clearly stated to come from a patient group. This study still reports lower rates of satisfaction than any of the clinical studies. Our findings suggest the difference may be attributed to a tendency for clinical studies to take place soon after treatment, to use medical assessors in clinical settings, and to use brief questionnaires with low complexity for responses.

Qualitative data collected as part of a wider review supports the above conclusions but shows, in addition, how patients' views on electroconvulsive therapy are often complex. One hypothesis is that many patients are not simply for or against the treatment or even are neutral about it. The concept of satisfaction and its measurement are also subject to these criticisms of oversimplification. Future research should include qualitative measures with representative samples of patients who have received electroconvulsive therapy. Electroconvulsive therapy is a complex intervention comprising many stages and the involvement of many staff, and patients may have varying views about these different stages.

Although the studies did not use consistent definitions or standardised ratings for memory loss, levels were between 29% and 79%. The levels were not determined by whether studies were clinician led or patient led, but the two types of study did differ in their analyses and interpretation of findings. Patient led research typically presents numerical results and illustrates these with quotations to show what the data mean in terms of patients' lives, whereas clinical researchers tend to undertake further statistical analysis of the data, sometimes ignoring the original data.

The findings relate to the experience of persistent memory loss. Routine neuropsychological tests have been used in studies of electroconvulsive therapy to establish objective measures of memory loss and concluded that there was no evidence of persistent memory loss. It would seem that these are the studies on which the Royal College of Psychiatrists based its findings. The studies, however, typically measure the ability to form new memories after treatment (antero-grade memory). Reports by patients of memory loss are of the erasing of autobiographical memories or retrograde amnesia. Thus the risks reported by patients do not appear in clinical assessments.

The levels of perceived benefit differed between patient led and clinician led studies because different methods were used and because in many cases these methods did not allow an adequate description of the complexity of subjective experience. Even where findings, such as persistent memory loss, did not differ between patient led and clinician led studies, the interpretations may have differed radically. It is therefore not surprising that disputes can arise and that organisations should emerge that provide support for those who feel their treatment has not been beneficial.

Conclusion
Although clinical trials concluded that electroconvulsive therapy is an effective treatment,⁵ measures of efficacy did not take into account all the factors that may lead patients to perceive it as beneficial or otherwise. Studies of treatment are needed that are able to investigate a range of outcomes valued by patients, including factors that impact on effectiveness and satisfaction. Also important is loss of autobiographical memory, which is widely described but insufficiently systematically investigated.

What is already known on this topic Around 11 000 people receive electroconvulsive therapy in England annually Controversy exists as to whether treatment is beneficial and whether patients are satisfied with it Patients' views have never been systematically reviewed What this study adds At least one third of patients report significant memory loss after treatment Routine neuropsychological tests to assess memory do not address the types of memory loss reported by patients Reported patient satisfaction with electroconvulsive therapy depends on the methods used to elicit a response

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This is an abridged version; the full version is on bmj.com

Editorial by Geddes and Carney

Search terms appear on bmj.com

Contributors: See bmj.com

Competing interests: This paper is based on a report funded by a grant from the Department of Health, England. The Department of Health has given permission for publication but does not necessarily endorse the views contained in the paper.

References

1. Department of Health. Electroconvulsive therapy: survey covering the period from January 1999 to March 1999, England. Stat Bull Crown Copyright, 1999.
2. Royal College of Psychiatrists. Fact sheet on ECT. London: RCP, 1995.
3. Freeman C. Patients' attitudes towards ECT. Psychopharmacol Bull 1986;22: 487-90.[Web of Science]
4. Freeman CP, Cheshire KA. Attitude studies on electroconvulsive therapy. Convulsive Ther 1986;2: 31-42.[Medline]
5. The UK ECT Review Group. Efficacy and safety of electroconvulsive therapy in depressive disorders: a systematic review and meta-analysis. Lancet 2003;354: 1369.

(Accepted May 15, 2003)

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