Parent-child discrepancies in answering

In pediatric and adolescent populations, eliciting the parent's view of the child/adolescent symptoms and the patient's view is common. Indeed, most questionnaires of mental health and QOL constructs, including the PeLTQL, include parent and child versions. The parent's version (the parent reporting about the child's symptoms) is considered to be an essential component in assessing the true impact of the health issues on the child (sometimes, children do not fully report their symptoms). Our group has studied discrepancies between parent and child reports in pediatric settings, including pediatric transplant settings, for over a decade. We found that such discrepancies peak at adolescence, that the adolescent's information (rather than the parent's report) is better aligned with a "gold standard" evaluation of mental health constructs, and that parents' report of a child's symptoms is not aligned with the adolescents' actual symptoms, but rather, with the parent's mental health (Shemesh E et.al., Pediatr Transplant. 2005 Oct;9(5):673-9.). We also found that a higher "discrepancy score," calculated as the difference between the child's and parent's score related to the child's ability to handle disease-specific tasks, is predictive of both nonadherence and rejection. (Annunziato RA et al., J Pediatr. 2018 Feb;193:128-133). We similarly observe substantial differences between PeLTQL scores, with a higher degree of distinction associated with poorer outcomes (below). But it is impossible to grasp those discrepancies and address them by simply looking at a busy clinic's parent and child version of a paper questionnaire. To truly incorporate the "discrepancy" insight into the routine work of a clinic, one must have a mechanism to compute the discrepancy score, highlight specific questions with widely discrepant results, and present those data to clinicians in a timely manner. Our procedure, which uses a patient and family engagement tool called RealTime Clinic, specifically geared to providing this information in advance of the clinic visit and in a user-friendly interface, addresses this barrier.