Patients Provide Feedback on ICD-11 Mental, Behavioral Disorder Guidelines

Female Doctor Standing in Front of a Support Group
Researchers gathered input from mental health service users for the mental, behavioral, and neurodevelopmental disorders chapter of the 11th Revision of the International Classification of Diseases.

While much of the response to proposed features of the mental, behavioral, and neurodevelopmental disorders chapter of the 11th Revision of the International Classification of Diseases (ICD-11) was positive, many patients reported that certain disease features were omitted from the draft ICD-11 and that guidelines did not reflect lived experience, according to qualitative data published in Lancet Psychiatry. Service users also endorsed the concept of an accessible “lay language” summary of ICD-11 guidelines.

In collaboration with the World Health Organization (WHO) Department of Mental Health and Substance Abuse, investigators gathered input from mental health service users for the chapter on mental, behavioral, and neurodevelopmental disorders of the ICD-11. The ICD-11 will be used for health reporting by WHO member states in January 2022. Investigators recruited patients from India, the United Kingdom, and the United States for focus group discussion on their experience with mental health services. Adult patients (age ≥18 years) with one of the five following diagnoses were eligible for inclusion: schizophrenia, bipolar disorder type 1, depressive episode, personality disorder, and generalized anxiety disorder. Patients were recruited through providers in clinical settings and by self-referral. Focus groups comprised two to ten individuals and a lead facilitator from the research team. Patients were provided with educational handouts, including a summary of the planned ICD updates. Transcriptions of group discussions were coded for recurring themes and patterns; codes were compared between researchers until consensus was reached. Clinicians in India and the United Kingdom who routinely used the ICD-10 were also asked to provide feedback.

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The most commonly occurring theme was that patients felt certain disease features had been omitted from the ICD-11. Patients with schizophrenia and bipolar disorder reported the greatest number of missing features, while patients with personality disorders felt that the proposed ICD-11 features “did not reflect their internal ‘felt’ experience.” In addition, many patients indicated that some ICD-11 features did not “resonate with [their] lived experience”; this theme was most common in patients with schizophrenia, bipolar disorder, and personality disorder.

A superordinate theme of language was also identified; patients with schizophrenia, depressive episode, and personality disorder disliked some of the negative language used to describe mental disorders. In addition, some technical language was inaccessible to patients. Patients responded positively to the ICD-11 lay summaries provided by study staff, suggesting that summaries with accessible language may be a useful research tool for mental health patients overall.  

The study was limited by the diagnoses, patients, countries, and languages included.

“Our study represents…the first time that service users have participated in systematic research to provide review and recommendations on proposed diagnostic guidelines for a major system,” the investigators wrote. “[Such] practices have the potential to enhance the descriptive accuracy and [maximize] the acceptability of the guidelines from the service user perspective: a key constituent group for whom the system is crucially relevant,” they concluded.


Hackmann C, Balhara YPS, Clayman K, et al. Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE study): an international qualitative study [published online July 8, 2019]. Lancet Psychiatry. doi:10.1016/S2215-0366(19)30093-8