Brief Report: Assessment Experiences of Children with Neurogenetic Syndromes: Caregivers' Perceptions and Suggestions for Improvement.
Bridgette Kelleher, Taylor Halligan, Tessa Garwood and 5 others
PMID 31955311WHAT IT FOUND
Caregivers of children with neurogenetic syndromes reported mixed assessment experiences.
They valued understanding scores but disliked generic feedback and inappropriate testing materials. Dissatisfaction increased with child age. Examiners should individualize testing, ask about interests first, and provide actionable, strengths-based recommendations.
Key findings
01Most caregivers did not agree that assessments or feedback were positive experiences, though they generally found written scores easy to understand.
02Dissatisfaction was higher for older children, with caregivers reporting that testing materials and scores were less appropriate for age and less useful for planning.
03Qualitative feedback highlighted poor rapport, lack of empathy, and 'textbook' recommendations as major issues, while suggesting better individualization of testing procedures.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was demographically homogeneous (mostly white, high-income, and female caregivers), limiting generalizability. The study was cross-sectional and relied on retrospective recall of a single assessment, which may introduce bias. The survey was designed for this study and interpreted at the item level, so it does not produce a validated total score. The study was powered only to detect medium to large effects in group comparisons, meaning smaller differences may have been missed. Participants were recruited via Facebook support groups, which may attract caregivers with stronger opinions or specific experiences.
Declared interests
The authors declared no conflict of interest.
The easy way to misread this
Do not interpret the lack of significant group differences in satisfaction by syndrome type or setting as evidence that these factors do not matter. The study was only powered to detect medium to large effects, so smaller but clinically relevant disparities may exist. Additionally, qualitative comments were solicited specifically for improvement, so they reflect suggestions rather than a comprehensive measure of overall satisfaction.