Study asks people with mental disorders to recommend changes to international guidelines for diagnosis

A researcher from Rutgers University contributed to the first study to gather the opinions of people with common mental health problems on the description of their disorders in the diagnostic guidelines.

The study, carried out by researchers from the United Kingdom and the United States in collaboration with the Department of Mental Health of the World Health Organization, is being published. The lancet.

"Including the personal experiences of people with disorders in diagnostic manuals will improve their access to treatment and reduce stigma," said Margaret Swarbrick, Assistant Associate Professor and Practice Director of Behavioral Health's Innovation and Wellness of Behavioral Health. Rutgers University, who collaborated with Kathleen M. Pike, executive director and co-scientific director of the Global Mental Health Program for the US portion of the study.

The researchers spoke to people with five common disorders (schizophrenia, bipolar disorder type 1, depressive episode, personality disorder and generalized anxiety disorder) about how their conditions should be described in the 11th revision of the International Clbadification of Disorders. diseases and related health problems (ICD-11). ICD is the most widely used clbadification system for mental disorders. This is the first time that people with diagnosed mental health issues, but who are not health practitioners, have been asked to comment on any published guidelines for diagnosing mental health.

The project involved 157 people diagnosed with these conditions in the United Kingdom, India and the United States. Participants reviewed an initial version of the ICD-11 chapter on mental, behavioral and neurodevelopmental disorders and recommended modifications to better reflect their experiences and / or remove objectionable terms.

Many participants stated that the project omitted the emotional and psychological experiences they experience regularly. People with schizophrenia have added references to anger, fear, memory difficulties, isolation, and difficulties communicating internal experiences. People with bipolar disorder have added anxiety, anger, nausea and increased creativity. People with generalized anxiety disorder have added nausea and anger. People with depression have added pain and anxiety. People with personality disorders have added to their distress and vulnerability to exploitation.

Participants also suggested removing confusing or stigmatizing terms such as "delay", "neuro-vegetative", "weird", "disorganized" and "maladaptive".

"We discovered that the current project reflected an external perspective of these conditions rather than the perspective of the person's lived experience," Swarbrick said. "This is a necessary perspective for clinicians and researchers." Participants appreciated the non-technical summaries, which suggest that the use of a common language would go a long way in bridging the communication gap between people diagnosed and clinicians. "