Journal Article

Using Parent Target Problem Narratives to Evaluate Outcomes in Children with Autism Spectrum Disorder

Bearss, Karen, Turner Kylan, Pritchett, Jill, Evans, Andrea N, Johnson, Cynthia R, Gillespie, Scott, Swiezy Naomi, Sheridan, Elisabeth, Smith, Tristram, Mruzek, Daniel W, Scahill, Lawrence, Lecavalier Luc

2021

Overview

This paper examines the reliability and validity of parent target problems (PTPs) in a multi-site randomized controlled trial of parent training (PT) versus psychoeducation (PEP) in children (150 boys, 19 girls; mean age 4.7 ± 1.2 years) with autism spectrum disorder (ASD) and disruptive behavior. At baseline, treatment blind, independent evaluators asked parents to nominate the child’s top two problems. Each problem was documented in a brief narrative. Narratives were reviewed and revised at follow-up visits during the six-month trial. When the trial was completed, five judges, blind to treatment condition, independently rated change from baseline on a 9-point scale (1 = normal; 2 = markedly improved; 3 = definitely improved; 4 = equivocally improved; 5 = no change; 6 = possibly worse; 7 = definitely worse; 8 = markedly worse; 9 = disastrously worse) at Weeks 8, 12, 16, and 24 (inter-rater intraclass correlation = 0.78). PTP scores for the two target problems were averaged across the five raters, yielding a mean score for each child at each time point. Mean PTP scores showed improvement in both treatment groups over the 24-week study. Compared to PEP, PTP ratings showed a steeper decline in PT based on significant interaction of group and time (t(df) = 2.14(155.9), p = 0.034; Week 24 effect size = 0.75). In categorical analysis, we compared cutoffs mean PTP scores of 3.0 (definitely improved), 3.25, and 3.5 with the positive response rate on the Clinical Global Impressions-Improvement scale from the original study. Sensitivities ranged from 52–78%. PTP narratives offer a systematic, reliable, and valid way to track child-specific outcomes in clinical trials and clinical practice.

• Publisher: Springer Nature B.V
• Subject: Autism / Autism Spectrum Disorders / Autistic children / Behavior Problems / Boys / Children / Clinical medicine / Clinical research / Clinical trials / Disruptive behaviour / Evaluators / Girls / Impressions / Measures / Narratives / Parent education / Parent-child relations / Parenthood education / Parents / Parents & parenting / Psychoeducational treatment / Randomized Controlled Trials / Reliability / Response rates