ICD-11 Fails to Capture Psychiatric Patients' 'Lived Experience'

Megan Brooks

July 11, 2019

Diagnostic descriptions for schizophrenia and other mental health disorders in the 11th edition of the International Classification of Diseases (ICD-11) don't always mirror patients' "lived" experience, new research shows.

Results from the study examining patients' perspectives show many believe that the descriptions of specific mental illnesses focus on external symptoms rather than the internal felt-experience.

"This research is important as it captures the perspectives of people who are ultimately most affected by psychiatric diagnosis — service users. This is a watershed moment for research into mental health diagnosis as it fits with the philosophy 'nothing about us without us,'" lead researcher Corinna Hackmann, PhD, DClinPsy, from the University of East Anglia, Norwich, United Kingdom, told Medscape Medical News.

The study was published online July 8 in Lancet Psychiatry.

Confusing, Objectionable Language

The ICD is produced under the auspices of the World Health Organization (WHO), and the latest version, ICD-11, will go into effect in January 2022.

The INCLUDE study was conducted by researchers in the United Kingdom, United States, and India, in collaboration with the WHO Department of Mental Health and Substance Abuse. It is the first study to systematically seek and collate perspectives from patients about a major mental health classification and diagnostic guideline.

Through 35 focus groups, 157 patients with schizophrenia, bipolar I disorder, depression, generalized anxiety disorder, and personality disorder in the United Kingdom, United States, and India compared the WHO ICD-11 diagnostic descriptions with their own experiences living with the disorders.   

It is important to note that in many cases the diagnostic descriptions for these disorders were perceived as "useful and relevant to the lived experience," the authors write.  

On the other hand, patients often believe the descriptions did not resonate with their internal or "felt" experience, comprising emotional, psychological, and somatic experiences, which could lead patients to feel "alienated, misunderstood, or invalidated," the investigators point out.

For example, patients with bipolar disorder thought the WHO description only reflected negative aspects of the condition and identified increased levels of creativity associated with mania as a positive aspect.

Patients with schizophrenia often felt the WHO diagnosis wording failed to account for certain aspects of the disease, such as difficulty relating to, and communicating with, other people, including feelings of isolation and alienation from other people.

In the personality disorder focus groups, participants reported that the word "maladaptive" – as in, "maladaptive patterns of cognition, emotional experience, emotional expression, and behavior" — did not fit with their experience.

There were fewer missing features for generalized anxiety disorder and depressive episode. Anger and pain were identified as missing features for generalized anxiety disorder, and anxiety and pain for depressive episode.

Participants found it "helpful to understand the diagnostic features," Hackmann told Medscape Medical News, "but clinicians should be aware that these may not entirely resonate with the internal experience."

She also noted that some language and terminology used in the ICD-11 was perceived as "confusing or objectionable" to some participants — for example, the use of the word "retardation" in depressive episode.

As part of the INCLUDE study, focus group participants compared the WHO's classification wording with alternate lay translations created by the study team.

They reported that the lay summaries were "much more clear, accessible, and easier to understand — and consequently they felt that they resonated much better with their own lived experience," coauthor Caitlin Notley, PhD, from University of East Anglia Norwich Medical School, United Kingdom, said in a news release.

WHO Is Listening

Many of the recommended changes stemming from this project have already been incorporated into the diagnostic guidelines for ICD-11, Geoffrey Reed, PhD, scientific codirector of the Global Mental Health Program at Columbia University, New York City, and WHO consultant, told Medscape Medical News.

"Although this was not a WHO study, this project was undertaken at the request of WHO and was conducted with WHO's consultation," said Reed, who coordinated most of the work of developing the ICD-11 classification of mental, behavioral, and neurodevelopmental disorders on behalf of the WHO Department of Mental Health and Substance Abuse.

"Although the intended users of the guidelines are health professionals, WHO believes that participation and feedback by service users are very important given that the guidelines are often used by health professionals as a basis for communication," said Reed.

"Moreover, in this age of the internet, people with mental health conditions are increasingly likely to access and read the guidelines themselves. We need to think about how to make the diagnostic process increasingly transparent and participative," he added.

The study had no commercial funding. The authors have reported no relevant financial relationships.

Lancet Psychiatry. Published online July 8, 2019. Abstract

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