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.

Study Overview

• Status: Completed
• Conditions: Mental Health Issue; Delivery of Health Care; Employment; Intellectual Disabilities (F70-F79); Problem;Behaviour;Adult

Detailed Description

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:

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

• Study Type: Observational
• Enrollment (Actual): 214

Contacts and Locations

Study Locations

• Norway
  • Trondheim, Norway, 7023
    • Norwegian University of Science and Technology

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 16 years and older (Child, Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Probability Sample

Study Population

Persons with intellectual disabilities and registered services in the municipalities in two regions localised in the north and middle of Norway will be invited to participate in the study.

Description

Inclusion Criteria:

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

Exclusion Criteria:

-

Study Plan

How is the study designed?

Design Details

• Observational Models: Ecologic or Community
• Time Perspectives: Cross-Sectional

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Health indicators in a Norwegian population of youths and adults with intellectual disabilities.	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.	Baseline

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
The Aberrant Behaviour Checklist-Community (ABC-C)	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).	Baseline
MPAS- Check (formerly known as the The PAS-ADD Checklist)	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	Baseline

Collaborators and Investigators

• Sponsor: Norwegian University of Science and Technology
• Collaborators: The Dam Foundation; University Hospital of North Norway; University of Tromso; The Norwegian Association for Persons with Developmental Disabilities
• Investigators: Study Chair: Erik Søndenaa, PhD, Department of Mental Health, Faculty of Medicine and Health Sciences, NTNU.

Study record dates

Study Major Dates

• Study Start (Actual): October 1, 2017
• Primary Completion (Actual): December 1, 2019
• Study Completion (Actual): December 1, 2019

Study Registration Dates

• First Submitted: January 19, 2023
• First Submitted That Met QC Criteria: January 19, 2023
• First Posted (Estimate): January 30, 2023

Study Record Updates

• Last Update Posted (Estimate): January 30, 2023
• Last Update Submitted That Met QC Criteria: January 19, 2023
• Last Verified: January 1, 2023

More Information

Terms related to this study

• Keywords: Adults; Intellectual Disability; Employment; Medication; Neurodevelopmental Disorders; Healthcare
• Additional Relevant MeSH Terms: Mental Disorders; Nervous System Diseases; Neurologic Manifestations; Neurobehavioral Manifestations; Neurodevelopmental Disorders; Intellectual Disability
• Other Study ID Numbers: 493747; 2022/FO387091 (Other Grant/Funding Number: Stiftelsen DAM)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No