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Completed

NCT Number: NCT03889002

North Health in Intellectual Disability

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. People with IDs will often require health- and social services throughout their lifetimes. Studies report worse health among people with IDs compared to the general population, in addition to more unmet healthcare needs and more difficulty accessing healthcare. There are also concerns about low levels of physical activity in this population.

In 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. In addition to a description of the health indicators, the objective of this project is delimited to assess the health determinant physical activity level in association with body mass index (BMI) and functioning.

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Key information

Conditions

Intellectual Disabilities (F70-F79) Intellectual Disability Mental Disorders Nervous System Diseases Neurobehavioral Manifestations Neurodevelopmental Disorders Neurologic Manifestations Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

16 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

University Hospital of North Norway

Tromsø, Norway

About this study

People with IDs are experiencing more illnesses and approximately 80% of adults 50 years or older have multimorbidities. To improve services, information about health care provision should be complemented with knowledge about the health situation and functioning in a community-based setting.

The main objectives of this study are to describe health indicators in a Norwegian population of youths and adults with IDs in relation to age, and to assess the associations between the health determinant physical activity and body mass index, physical function, activities and social participation in youths and adults with IDs.

Assessments of physical and mental health indicators, and aspects of activities and social participation according to International Classification of Functioning, Disability and Health (ICF), in relation to health determinants and unmet healthcare needs in a cross-sectional health screening survey.

The prevalence of suitable health indicators will be compared to studies in this area and from the following Norwegians population based studies: the "Tromsø-study", the "HUNT" study and the "NORSE study".

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

  • A feasibility study of the use of tests like the Short Physical Performance Battery.
  • An overview of the health indicators among youths and adults with intellectual disabilities in Norway, in relation to age groups.
  • Presentation of levels and predictors for physical activity, as well as body mass index, in youths and adults with IDs.
  • Presentation of functioning (daily activities and work) in association to levels of physical activity.

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

-

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. Communication Function Classification System (CFCS).

    Time frame: Baseline

    The CFCS is a 5-category rating system. Where Level 1 is best and Level 5 worst.

  2. The Community Integration Questionnaire (CIQ).

    Time frame: Baseline

    The scale contains 15 items to assess social role limitations and community interactions in persons With Health disorders. The items are scored on a likert-type scale. The total scale range fraom 0-29 where 29 is Maximum community integration.

  3. The Coherence of social care scale.

    Time frame: Baseline

    The Coherence of social care scale measures the coherence of social care and the stability of services in general. The scale uses a responscale from 1-4 (higher is better)

  4. The Short Physical Performance Battery (SPPB).

    Time frame: Baseline

    The SPPB measures physical functioning like balance, gait and muscular functioning. Total scale range from 0-12 (higher score indicate better functionin).

  5. The Timed Up and GO (TUG).

    Time frame: Baseline

    The TUG measures Balance, gait and general functioning. The time one person use to get up from a Chair, walk 3 meters and then return back to the Chair is measured in Seconds. Less time is better functioning.

  6. One-legged Stance test

    Time frame: Baseline

    The One-legged Stance test measures balance. The time in Seconds of how long a person can Balance on one legg is measured. Longer time is better functioning.

  7. The Gross Motor Function Classification Scale (GMFCS).

    Time frame: Baseline

    The GMFCS measures motor functioning. It is a 5-category rating scale where 1 is most able and 5 is most Limited functioning.

  8. Body mass index (BMI)

    Time frame: Baseline

    BMI is calculated by measuring height and weight.

  9. Overarm circumference.

    Time frame: Baseline

    Overarm circumference is measured.

  10. Measuring Bloodpressure.

    Time frame: Baseline

    Systolic and diastolic bloodpressure are measured.

  11. Waist circumference

    Time frame: Baseline

    Waist circumference is measured.

Sponsors and collaborators

Lead sponsor

University Hospital of North Norway

Other

Collaborators

  • Norwegian Centre for Ageing and Health
  • Norwegian Extra Foundation for Health and Rehabilitation
  • Norwegian University of Science and Technology
  • Research Centre for Habilitation and Rehabilitation Models and Services
  • The Norwegian Association for Persons with Developmental Disabilities
  • University of Tromso

Registry information

Official study title

Health Indicators, Functioning and Health Care Services in Youths and Adults With Intellectual Disabilities. A Cross-sectional Multicentre Study.

Acronym: NOHID

Important dates

Study start
2017
Primary completion
2019
Study completion
2019
First posted
Mar 25, 2019
Registry last updated
Apr 6, 2020

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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