INCLUDE: Using Lived Experience to Improve Mental Health Diagnosis v1

NCT03131505 | Completed

• 1 other identifier: 216352
• Study Type: observational
• Target: 59
• Locations: 1 country
• Sites: 1

Brief Summary

The focus of this study is not about what it is like to have a mental disorder, but instead the diagnostic experience. Some people find diagnoses helpful, but some find them upsetting and harmful. Research is therefore needed to improve diagnostic processes. It has been suggested that patient experiences and outcomes may be affected by the diagnostic tools used, including diagnostic criteria, labels and language. In the NHS, the tool used by doctors to help diagnose people is a guidebook called the International Classification of Diseases (ICD). A new version of this guide is due to be released in 2018. This project will use focus groups to ask people who use mental health services and diagnosing doctors in those services what they think about the labels and language in the new guide. The investigators can then suggest changes before the guide is published. The investigators hope that this research will improve mental health diagnosis. The research will take place in Norfolk and Suffolk and span eight months.

Conditions

Mental Health Issue (E.G., Depression, Psychosis, Personality Disorder, Substance Abuse); Schizophrenia; Generalised Anxiety Disorder; Bipolar Disorder

Outcome Measures

Primary Outcomes (1)

• Qualitative evaluation of the impact of new ICD-11 diagnostic criteria via focus groups with people living with mental health conditions and clinicians.

  Focus groups will be undertaken with people who have received a mental health diagnosis (unipolar or bipolar depression, generalised anxiety disorder, schizophrenia, personality disorder) and clinicians working in mental health services. The focus groups will follow a structured topic guide, based around the new diagnostic criteria and language for each condition to understand participants' views on meaning, accessibility, stigma and recovery

  8 months

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Mental health service users clinicians

You may qualify if:

• Adult service users will have formally received one of the five diagnoses under investigation: Unipolar Depression, Schizophrenia, Bipolar Disorder, Generalised Anxiety Disorder or Personality Disorder.
• Clinicians will have had experience working with mental health, either as a GP or psychiatrist, where diagnosing any of the above diagnoses is part of their role.
• Carers will have had experience looking after someone with the above diagnoses.
• Service users with multiple diagnoses will be allowed to participate, and choose which one of the relevant focus groups they would like to attend.
• Service users will be under the care of an NSFT service.

You may not qualify if:

• Individuals under 18 years old.
• Individuals who do not have capacity to give consent.
• Individuals who lose capacity during the study.
• Individuals who do not speak English.
• Individuals will be excluded if their participation is deemed unsafe to themselves or others by their lead clinician or clinicians on the research team.
• Individuals who have taken part in another group or part of the study.

Sponsors & Collaborators

• Norfolk and Suffolk NHS Foundation Trust: lead
• University of East Anglia: collaborator

Study Sites (1)

Norfolk and Suffolk NHS Foundation Trust

Norwich, NR6 5BE, United Kingdom

Location

Related Publications (1)

• Hackmann C, Green A, Notley C, Perkins A, Reed GM, Ridler J, Wilson J, Shakespeare T. Protocol for a qualitative study exploring perspectives on the INternational CLassification of Diseases (11th revision); Using lived experience to improve mental health Diagnosis in NHS England: INCLUDE study. BMJ Open. 2017 Sep 3;7(9):e018399. doi: 10.1136/bmjopen-2017-018399.

  PMID: 28871029 DERIVED

MeSH Terms

Conditions

Depression; Psychotic Disorders; Personality Disorders; Substance-Related Disorders; Schizophrenia; Generalized Anxiety Disorder; Bipolar Disorder

Condition Hierarchy (Ancestors)

Behavioral Symptoms; Behavior; Schizophrenia Spectrum and Other Psychotic Disorders; Mental Disorders; Chemically-Induced Disorders; Anxiety Disorders; Bipolar and Related Disorders; Mood Disorders

Study Officials

• Corinna Hackmann

  Norfolk and Suffolk NHS Foundation Trust

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 20, 2017
• First Posted: April 27, 2017
• Study Start: February 22, 2017
• Primary Completion: December 1, 2017
• Study Completion: February 21, 2018
• Last Updated: March 29, 2018

Record last verified: 2018-03

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)