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

NCT05857592 | Completed DMC

• 1 other identifier: Koraal-ABAS-Kooijmans
• Study Type: interventional
• Target: 20
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Mild Intellectual Disability; Borderline Intellectual Functioning

Keywords

self-report questionnaires; inclusive diagnostics; easy-read language; adaptive functioning

Outcome Measures

Primary Outcomes (8)

• 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 Outcomes (5)

• Self-reported Adaptive Functioning - original ABAS-3 scores

  At baseline (T0)

• Self-reported Adaptive Functioning - adapted ABAS-3 scores

  Approximately 8 weeks after baseline (T1)

• Informant-reported Adaptive Functioning - original ABAS-3 scores

  At baseline (T0)

• Informant-reported Adaptive Functioning - adapted ABAS-3 scores

  Approximately 8 weeks after baseline (T1)

• Self-reported Adaptive functioning - SCAF

  At baseline (T0)

Study Arms (1)

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; Diagnostic Test: Adaptive functioning self-report questionnaire - adapted

Interventions

Adaptive functioning self-report questionnaire DIAGNOSTIC_TEST

A self-report questionnaire for assessing level of adaptive functioning

Experimental

Adaptive functioning self-report questionnaire - adapted DIAGNOSTIC_TEST

A self-report questionnaire for assessing level of adaptive functioning, adapted to the communication level of the participant

Experimental

Eligibility Criteria

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

You may qualify if:

• 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.

You may not qualify if:

• Severe physical or sensory impairment limiting ability to participate.

Sponsors & Collaborators

• Koraal: lead
• University of Amsterdam: collaborator
• Zuyd University of Applied Sciences: collaborator

Study Sites (1)

Koraal

Sittard, L, 6130 PC, Netherlands

Location

Related Publications (1)

• 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.

  BACKGROUND

Study Officials

• Roel Kooijmans, MSc

  Koraal

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Senior Researcher

Model Details: A mixed-method repeated-measures design will be used: data are collected using both qualitative and quantitative methods at two points in time (before and after adaptation) from the same participants.

Study Record Dates

• First Submitted: March 15, 2023
• First Posted: May 12, 2023
• Study Start: July 1, 2023
• Primary Completion: October 31, 2023
• Study Completion: May 1, 2024
• Last Updated: May 10, 2024

Record last verified: 2024-05

Data Sharing

• IPD Sharing: Will not share

Locations

NL (1)