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NCT Number: NCT05703503

Mental Health and Healthcare in Adults With Intellectual Disabilities

Intellectual disability (ID) is a diagnosis characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. The disability originates before age 18 years. The prevalence of mental ill-health among adults with intellectual disabilities is higher than the general population. Individuals with ID use psychotropic medication extensively, but studies indicate that less than one out of three who use psychotropic drugs have a psychiatric diagnosis. The drugs are usually prescribed by a regular general practitioner. People with IDs will often require health- and social services throughout their lifetimes. Studies report worse mental and physical health among people with IDs compared to the general population, in addition to more unmet healthcare needs and more difficulty accessing healthcare.

General health surveys in Norway do not include people with intellectual disabilities, and studies of health indicators in this group are largely lacking. Further, the unique organization of services for this group in Norway calls for specific research efforts. This project will use multinational health indicators for youths and adults with IDs in a biopsychosocial context in attempt to identify unmet health care needs to improve services. The project will focus on mental health and challenging behavior and how the related healthcare needs are met. We will also look at the relationship between mental health, behavioral problems and workforce employment amongst people with intellectual disabilities.

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Key information

About this study

Intellectual disability (ID) is a diagnosis characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. The disability originates before age 18 years. The prevalence of mental ill-health among adults with intellectual disabilities is higher than the general population. Individuals with ID use psychotropic medication extensively, but studies indicate that less than one out of three who use psychotropic drugs have a psychiatric diagnosis. The drugs are usually prescribed by a regular general practitioner. People with IDs will often require health- and social services throughout their lifetimes. Studies report worse mental and physical health among people with IDs compared to the general population, in addition to more unmet healthcare needs and more difficulty accessing healthcare.

General health surveys in Norway do not include people with intellectual disabilities, and studies of health indicators in this group are largely lacking. Further, the unique organization of services for this group in Norway calls for specific research efforts. This project will use multinational health indicators for youths and adults with IDs in a biopsychosocial context in attempt to identify unmet health care needs to improve services. The project will focus on mental health and challenging behavior and how the related healthcare needs are met. We will also look at the relationship between mental health, behavioral problems and workforce employment amongst people with intellectual disabilities.

The following articles will be published as part of this project:

  • "The relationship between symptoms of mental health problems, diagnoses and medication in adults with intellectual disabilities"
  • "The contact between individuals with intellectual disabilities with mental health problems, and mental health professionals: characteristics of the patients and the professionals.
  • "Mental health, behavioral problems and workforce employment amongst people with intellectual disabilities".

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Clinical diagnosis of intellectual disability
  • Age 16 or older and providing consent to participate.

Exclusion criteria

  • Age 15 or younger.

Treatment and study plan

Primary outcomes

  1. Health indicators in a Norwegian population of youths and adults with intellectual disabilities.

    Time frame: Baseline

    Health indicators as measured by The POMONA Checklist of Health Indicators (P15). The health indicators include measures of socio-demographics, Health status, Health determinants and Health systems.Physical Activity is defined as a Health determinant in this study in accordance With the POMONA Health indicator classification.

Secondary outcomes

  1. The Aberrant Behaviour Checklist-Community (ABC-C)

    Time frame: Baseline

    The Aberrant Behaviour Checklist-Community (ABC-C) is a rating scale with 58 items for the assessment of behavioural problems in people with intellectual disabilities. The items are grouped into five subscales: (I) Irritability (15 items), (II) Social Withdrawal (16 items), (III) Stereotypic Behaviour (7 items), (IV) Hyperactivity/Non-compliance (16 items) and (V) Inappropriate Speech (4 items).

  2. Moss Psychiatric Assessement Schedules- Checklist (MPAS- Check)

    Time frame: Baseline

    The checklist is a screening instrument specifically designed to help staff recognize mental health problems in the people with intellectual disability for whom they care, and to make informed referral decisions. The instrument consists of a life-events checklist and 29 symptom items scored on a four-point scale

Sponsors and collaborators

Lead sponsor

Norwegian University of Science and Technology

Other

Collaborators

  • The Dam Foundation
  • The Norwegian Association for Persons with Developmental Disabilities
  • University Hospital of North Norway
  • University of Tromso

Registry information

Important dates

Study start
2017
Primary completion
2019
Study completion
2019
First posted
Jan 30, 2023
Registry last updated
Feb 3, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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