Laura C Hart1, Maria Díaz-González de Ferris2, Meaghan Nazareth2, Richard A Faldowski3, Eniko Rak4, Stephen R Hooper3, Maggwa Ndugga2, Miranda A L van Tilburg5. 1. The Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, NC, United States of America. Electronic address: Laura.Hart@nationwidchildrens.org. 2. Division of General Pediatrics and Adolescent Medicine, University of North Carolina School of Medicine, 231 MacNider Building, NC, United States of America. 3. Department of Allied Health Sciences, University of North Carolina at Chapel Hill, NC, United States of America. 4. Division of Clinical Rehabilitation and Mental Health Counseling, Department of Allied Health Sciences, University of North Carolina at Chapel Hill, NC, United States of America. 5. Department of Medicine, University of North Carolina at Chapel Hill, NC, United States of America; College of Pharmacy and Health Sciences, Campbell University, NC, United States of America; School of Social Work, University of Washington, NC, United States of America.
Abstract
PURPOSE: To develop and evaluate a parent-proxy measure of youth HCT readiness: the TRxANSITION Index-Parent Version. DESIGN AND METHODS: We recruited parents (77% female) and youth (ages 12 to 25) to complete transition readiness measures during outpatient clinic visits. The TRxANSITION Index-Parent Version contains two domains: the Parent Knowledge Domain assessing a parent's knowledge of their youth's illness, and the Parent Proxy Domain, which provides a parental perspective regarding a youth's transition readiness skills. We evaluated the TRxANSITION Index - Parent Version for differences between parent and youth reports of HCT readiness, associations between parent's score and youth's characteristics, and item-category, item-sub-index, and sub-index category correlations. RESULTS: Data from 93 parents-youth dyads were analyzed. Parents scored significantly higher than youth in the Parent Knowledge Domain and similarly in the Parent Proxy Domain. Parents of daughters had significantly higher scores in the Parent Knowledge Domain than parents of sons and reported similar scores to Parents of sons in the Parent Proxy Domain. Only the self-management sub-index significantly correlated with youth's age. The sub-index-domain, item-sub-index, and item-domain correlations assessed were generally large in magnitude (r > 0.5). CONCLUSIONS: The TRxANSITION Index-Parent Version shows promise as a means of assessing parent knowledge of a youth's illness and may provide an accurate proxy assessment of a youth HCT readiness skills. PRACTICE IMPLICATIONS: Obtaining parental perspective on a youth's HCT readiness may provide useful clinical information during the transition process.
PURPOSE: To develop and evaluate a parent-proxy measure of youth HCT readiness: the TRxANSITION Index-Parent Version. DESIGN AND METHODS: We recruited parents (77% female) and youth (ages 12 to 25) to complete transition readiness measures during outpatient clinic visits. The TRxANSITION Index-Parent Version contains two domains: the Parent Knowledge Domain assessing a parent's knowledge of their youth's illness, and the Parent Proxy Domain, which provides a parental perspective regarding a youth's transition readiness skills. We evaluated the TRxANSITION Index - Parent Version for differences between parent and youth reports of HCT readiness, associations between parent's score and youth's characteristics, and item-category, item-sub-index, and sub-index category correlations. RESULTS: Data from 93 parents-youth dyads were analyzed. Parents scored significantly higher than youth in the Parent Knowledge Domain and similarly in the Parent Proxy Domain. Parents of daughters had significantly higher scores in the Parent Knowledge Domain than parents of sons and reported similar scores to Parents of sons in the Parent Proxy Domain. Only the self-management sub-index significantly correlated with youth's age. The sub-index-domain, item-sub-index, and item-domain correlations assessed were generally large in magnitude (r > 0.5). CONCLUSIONS: The TRxANSITION Index-Parent Version shows promise as a means of assessing parent knowledge of a youth's illness and may provide an accurate proxy assessment of a youth HCT readiness skills. PRACTICE IMPLICATIONS: Obtaining parental perspective on a youth's HCT readiness may provide useful clinical information during the transition process.
Authors: Kathryn Dahir; Ruban Dhaliwal; Jill Simmons; Erik A Imel; Gary S Gottesman; John D Mahan; Gnanagurudasan Prakasam; Allison I Hoch; Prameela Ramesan; Maria Díaz-González de Ferris Journal: J Clin Endocrinol Metab Date: 2022-02-17 Impact factor: 5.958