Improving the Cognitive Accessibility of Self-reports for People With ID

Adapting Self-report Instruments for People With Intellectual Disability to Improve Cognitive Accessibility - Putting Guidelines to the Test

In the proposed study, the investigators aim to investigate whether the existing ABAS-3 self-report questionnaire is suitable to be completed meaningfully by individuals who are perceived as having mild intellectual disability (55<IQ<85) based on cognitive impairment. Based on the participants' experiences and researchers' expertise, the investigators develop a 'more inclusive' self-report version. The investigators then look at the extent to which participants indicate that they understand this version better, based on user experiences and limited psychometric research. In doing so, the investigators also compare the outcomes of the self-report and informant-report variant.

Study Overview

• Status: Completed
• Conditions: Mild Intellectual Disability; Borderline Intellectual Functioning
• Intervention / Treatment: Diagnostic test: Adaptive functioning self-report questionnaire; Diagnostic test: Adaptive functioning self-report questionnaire - adapted

• Study Type: Interventional
• Enrollment (Actual): 20
• Phase: Not Applicable

Contacts and Locations

Study Locations

• Netherlands
  • L
    • Sittard, L, Netherlands, 6130 PC
      • Koraal

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

Description

Inclusion Criteria:

• Age 18 years or older
• Last known Total Intelligence Quotient (TIQ) 55 - 85
• Receiving support from a care organization for persons with ID.
• A care worker who knows the participant for at least a year and knows him well enough tot complete the informant version of the ABAS-3 is available.

Exclusion Criteria:

• Severe physical or sensory impairment limiting ability to participate.

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Experimental; Persons with Mild Intellectual Disability (MID) or Borderline Intellectual Functioning (BIF) complete the ABAS-3 in assisted form on two occasions: the original version the first time and an adapted version after a few weeks.	Diagnostic test: Adaptive functioning self-report questionnaire; A self-report questionnaire for assessing level of adaptive functioning; Diagnostic test: Adaptive functioning self-report questionnaire - adapted; A self-report questionnaire for assessing level of adaptive functioning, adapted to the communication level of the participant

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Scoring comprehension - T0	Degree to which the qualitative information provided by the participant aligns with the self-reported score on the original version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) questionnaire. Outcomes are 0, scores align, -1, scores are lower than answer would suggest, +1, score is higher than answer would suggest.	At baseline (T0)
Scoring comprehension - T1	Degree to which the qualitative information provided by the participant aligns with the self-reported score on the original version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) questionnaire. Outcomes are 0, scores align, -1, scores are lower than answer would suggest, +1, score is higher than answer would suggest.	Approximately 8 weeks after baseline (T1)
Text comprehension - cognitive interviews T0	Level of verbal understanding of questions in the questionnaire - qualitative analysis of answers from cognitive interviews during assessment of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition). Terms and concepts that were misinterpreted, participant utterings of confusion of statements of difficulty	At baseline (T0)
Text comprehension - cognitive interviews T1	Level of verbal understanding of questions in the questionnaire - qualitative analysis of answers from cognitive interviews during assessment of an adapted version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition). Terms and concepts that were misinterpreted, participant utterings of confusion of statements of difficulty.	Approximately 8 weeks after baseline (T1)
Comprehension of instructions - cognitive interviews T0	Level of verbal understanding of the instructions in the questionnaire - original version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition). Number of elements that were correctly identiefied (out of possible 10).	At baseline (T0)
Comprehension of instructions - cognitive interviews T1	Level of verbal understanding of the instructions in the questionnaire - adapted version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition). Number of elements that were correctly identiefied (out of possible 10).	Approximately 8 weeks after baseline (T1)
Overall difficulty score - T0	Likert scale rating of the overall difficulty of items of original version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) by participants (from 1. very easy - 5. very difficult)	At baseline (T0)
Overall difficulty score - T1	Likert scale rating of the overall difficulty of items of adapted version of the ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) by participants (from 1. very easy - 5. very difficult)	Approximately 8 weeks after baseline (T1)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Self-reported Adaptive Functioning - original ABAS-3 scores	The ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) is an observational scale that measures adaptive behaviour. Both self-report and informant report versions are available. In the context of the current study, a 30-item abbreviated version is used. Composite scores are calculated: a total score and three domain scores (conceptual, social and practical domain). Scores range from 0-90 for the total scale and 0-30 for each domain scale. Higher scores indicate better adaptive functioning.	At baseline (T0)
Self-reported Adaptive Functioning - adapted ABAS-3 scores	The ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) is an observational scale that measures adaptive behaviour. Both self-report and informant report versions are available. In the context of the current study, a 30-item abbreviated version is used. Composite scores are calculated: a total score and three domain scores (conceptual, social and practical domain). Scores range from 0-90 for the total scale and 0-30 for each domain scale. Higher scores indicate better adaptive functioning. The second time participants complete the ABAS (approximately 8 weeks after baseline, T1), an adapted version is used, with language and design adapted to the comprehension level of participants according to the outcomes at baseline (T0).	Approximately 8 weeks after baseline (T1)
Informant-reported Adaptive Functioning - adapted ABAS-3 scores	The ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) is an observational scale that measures adaptive behaviour. Both self-report and informant report versions are available. In the context of the current study, a 30-item abbreviated version is used. Composite scores are calculated: a total score and three domain scores (conceptual, social and practical domain). Scores range from 0-90 for the total scale and 0-30 for each domain scale. Higher scores indicate better adaptive functioning. For the informant-report an adapted version of the original is used; the adaptations for the self-report version are replicated for the informant version.	Approximately 8 weeks after baseline (T1)
Self-reported Adaptive functioning - SCAF	The SCAF (Screener for Adaptive Functioning) is a screening questionnaire for adaptive functioning for individuals who may have MID or BIF. The SCAF yields a total AF score (min 0 - max 24), with higher scores indicating better adaptive functioning.	At baseline (T0)
Informant-reported Adaptive Functioning - original ABAS-3 scores	The ABAS-3 (Adaptive Behaviour Assessment System - Third Edition) is an observational scale that measures adaptive behaviour. Both self-report and informant report versions are available. In the context of the current study, a 30-item abbreviated version is used. Composite scores are calculated: a total score and three domain scores (conceptual, social and practical domain). Scores range from 0-90 for the total scale and 0-30 for each domain scale. Higher scores indicate better adaptive functioning. For the informant-report an adapted version of the original is used; the adaptations for the self-report version are replicated for the informant version.	At baseline (T0)

Collaborators and Investigators

• Sponsor: Koraal
• Collaborators: University of Amsterdam; Zuyd University of Applied Sciences
• Investigators: Principal Investigator: Roel Kooijmans, MSc, Koraal

Publications and helpful links

General Publications

• Kooijmans, R., Mercera, G., Langdon, P. E., & Moonen, X. (2022). The adaptation of self-report measures to the needs of people with intellectual disabilities: A systematic review. Clinical Psychology: Science and Practice.

Study record dates

Study Major Dates

• Study Start (Actual): July 1, 2023
• Primary Completion (Actual): October 31, 2023
• Study Completion (Actual): May 1, 2024

Study Registration Dates

• First Submitted: March 15, 2023
• First Submitted That Met QC Criteria: May 10, 2023
• First Posted (Actual): May 12, 2023

Study Record Updates

• Last Update Posted (Actual): May 10, 2024
• Last Update Submitted That Met QC Criteria: May 8, 2024
• Last Verified: May 1, 2024

More Information

Terms related to this study

• Keywords: self-report questionnaires; inclusive diagnostics; easy-read language; adaptive functioning
• Additional Relevant MeSH Terms: Mental Disorders; Nervous System Diseases; Neurologic Manifestations; Neurobehavioral Manifestations; Neurodevelopmental Disorders; Intellectual Disability
• Other Study ID Numbers: Koraal-ABAS-Kooijmans

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: Study data are highly specific for this study and not relevant for sharing with other researchers, except for validation of results in exceptional circumstances. When required, relevant data will be made available upon request to reviewers or auditors, subject to privacy regulations. Only anonymized data will be shared.

Drug and device information, study documents

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