International Survey of Electroconvulsive Therapy

Five co-researchers and I have just launched the first-ever international survey of people who have received electroconvulsive therapy (ECT), called electroshock therapy in the United States.

The survey is also unique in that it is the first to simultaneously survey the relatives and friends of ECT recipients.

The research team includes three women who have had ECT themselves, from England, Northern Ireland, and the United States.

The survey, a draft of which was reviewed by Mind, the United Kingdom’s largest mental health nongovernmental organization, includes questions on the positive and negative effects of the treatment. It also covers what information patients and relatives were given before the treatment.

In addition, there are questions about the causes of the problems for which ECT was prescribed, such as depression, and whether the social causes (such as loneliness, bereavement, abuse, and poverty) were addressed before resorting to ECT.

Most ECT studies report assessments of efficacy and adverse effects made by the psychiatrists who gave the ECT and tend to produce generally favourable outcomes. But several small studies asking patients directly, in the 1980s and 1990s, found rates of permanent memory loss in between 29 and 55 percent of patients.

We believe, therefore, that a large-scale international survey of patients’ experiences—positive, negative, and mixed—of this controversial approach to treatment is long overdue. Although their views of whether ECT is effective and safe are just as subjective as the views of the psychiatrists involved, we believe that their voices, and those of their loved ones, should be heard.

Online surveys have the disadvantage of not necessarily generating a sample that is representative of all recipients of a treatment. They do, however, have the capacity to reach far more people than a typical treatment trial. For example, our surveys of users of antidepressants and antipsychotics have generated valuable data from hundreds of people around the world who have taken the drugs for months or years, whereas most drug trials are much smaller and last no longer than eight weeks.

Lisa Morrison, a co-researcher based in Belfast, who has had several courses of ECT herself and spent many months in a psychiatric hospital comments:

"ECT has caused huge gaps in my memory. It's particularly distressing as a Mum to have lost significant memories of my children growing up. I know not everyone's memory is affected that way and some people feel ECT has helped them. The views and experiences of people using services and those supporting them are essential and too often not heard. The treatment can sometimes affect relatives too and their relationship with those receiving it. We want everybody to know their experiences matter."

The online, anonymous survey is open to anyone, anywhere in the world, who is at least 18 years old and has had ECT, other than in the past 4 weeks. The study has been approved by the University of East London Ethics Committee.

We are relying partly on what has become known as the "snowballing" approach to inviting potential participants. So, please tell anyone you know who has had ECT, or who has a close friend or relative who has had ECT, about the survey. Perhaps also share it with any mental health organizations or networks you belong to in your part of the world. Thanks!