Caregiver-reported relevance of the BRIEF-2 in youth with Down syndrome: an initial content validity study

Establishing evidence of content validity, or how well a measure reflects the intended outcome, is essential for developing or selecting assessment tools that support individualized care and research in clinical populations like Down syndrome (DS). This study aimed to examine caregiver-reported relevance of a widely used measure of executive function in school-aged youth with DS, the Behavior Rating Inventory of Executive Function, Second Edition (BRIEF-2), Parent Form. Specifically, this study focused on one aspect of content validity, relevance to the target population, which has yet to be systematically evaluated in DS.

This study integrated data from two online studies of youth with DS. After completing the BRIEF-2, caregivers were asked forced-choice questions about the relevance of the measure to their child with DS, as well as an open-text question about their response strategy for items they deemed not relevant.

Caregivers of 281 youth with DS between the ages of 6-18 years (M = 12.7, SD = 3.4) reported on the relevance of the BRIEF-2 for their child. Just under half (46.3%) of caregivers reported that they deemed items not relevant. Of those caregivers who deemed items not relevant, just over half (57.7%) described their response strategy was to select "Never" for items that were not relevant; however, a range of strategies was employed. Caregivers rated the measure overall as moderately relevant to their child, although there was considerable range in ratings. Additionally, caregivers of youth who were ≤ 12 years old, had lower expressive language skills (i.e., no phrases/sentences) or lower adaptive function (> 2 SDs below the mean), rated items as not relevant to their child more often and provided lower overall measure relevance ratings than caregivers of youth who were older and/or had stronger functional skills.

This initial evaluation of the content validity of the BRIEF-2 in school-aged youth with DS indicates that there is a range of caregiver viewpoints about measure relevance. Findings highlight the need for more comprehensive studies that engage patients/families and professionals to better understand the broader content validity of the BRIEF-2 in DS across ages and developmental levels to inform any modifications for use in future clinical and research contexts.