Agreement between parents' and clinical researchers' ratings of behavioral problems in children with fragile X syndrome and chromosome 15 imprinting disorders.
Parent and clinician ratings rarely line up—collect both before you pick a treatment target.
01Research in Context
What this study did
Arpone et al. (2022) asked 42 parents and trained researchers to rate the same kids. The kids had fragile X or chromosome 15 imprinting disorders. They used the Child Behavior Checklist and the Behavior Assessment System for Children. Each adult filled out the forms on the same day.
The team then ran stats to see how close the scores were. They looked at every problem area: anxious, hyperactive, aggressive, and withdrawn.
What they found
Agreement was poor to moderate. The biggest gap was for attention and hyperactivity. Parents often marked higher scores than the researchers. The match was a bit better for anxiety and withdrawn behaviors.
Diagnosis mattered. Fragile X families showed wider gaps than chromosome the families. Age and sex did not change the pattern much.
How this fits with other research
Whitehouse et al. (2014) saw the same parent-clinician split in siblings of kids with ASD. Again, moms and dads scored higher than pros. This pattern is not rare.
Heald et al. (2020) found the same rift in high-functioning ASD teens. Parents reported more depression and hyperactivity than the youths saw in themselves. Same message: one viewpoint is not enough.
Lecavalier (2006) used parent and teacher ratings to sort kids with PDD into clear clusters. The clusters only emerged when both adults gave input. Single rater data would have missed the groups.
Why it matters
If you write a behavior plan from only parent data, you might chase problems that are not top priority in clinic. If you trust only clinic data, you might miss home triggers. Collect both every time. Use a simple rule: if the two scores differ by more than one standard deviation, observe the behavior yourself before you target it.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a second rater form to your intake packet and graph any score gaps before writing goals
02At a glance
03Original abstract
BACKGROUND: Despite the increasing number of clinical trials involving children with neurodevelopmental disorders, appropriate and objective outcome measures for behavioral symptoms are still required. AIM: This study assessed the agreement between parents' and clinical researchers' ratings of behavioral problem severity in children with fragile X syndrome (FXS) and chromosome 15 imprinting disorders. METHODS AND PROCEDURES: The cohort comprised 123 children (64% males), aged 3-17 years, with FXS (n = 79), Prader-Willi (PWS; n = 19), Angelman (AS; n = 15), and Chromosome 15q duplication (n = 10) syndromes. Specific items from the Autism Diagnostic Observation Schedule-Second Edition and Aberrant Behavior Checklist-Community Edition mapping to corresponding behavioral domains were selected ad-hoc, to assess behavioral problems. OUTCOMES AND RESULTS: Inter-rater agreement for the cohort was slight for self-injury (Intraclass Correlation Coefficient (ICC) = 0.12), fair for tantrums/aggression (0.24) and mannerisms/stereotypies (0.25), and moderate for hyperactivity (0.48). When stratified by diagnosis, ICC ranged from poor (0; self-injury, AS and PWS) to substantial (0.48; hyperactivity, females with FXS). CONCLUSIONS AND IMPLICATIONS: The high level of inter-rater disagreement across most domains suggests that parents' and researchers' assessments led to discrepant appraisal of behavioral problem severity. These findings have implications for treatment targets and outcome measure selection in clinical trials, supporting a multi-informant approach.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104338