A Clinical Tool to Measure the Components of Health-Care Transition from Pediatric Care to Adult Care: The UNC TR_xANSITION Scale

Abstract

Objective: To describe the development of the University of North Carolina (UNC) TR_xANSITION Scale that measures the health-care transition and self-management skills by youth with chronic health conditions. Methods: Item and scale development of the UNC TR_xANSITION Scale was informed by two theoretical models, available literature, and expert opinion interviews and feedback from youth with chronic conditions, their parents, and interdisciplinary collaboration. Through an iterative process, three versions of the scale were piloted on a total of 185 adolescents and emerging adults with different chronic illnesses. This clinically administered scale relies on a semi-structured interview format of the patient and does not rely solely on patient report, but is verified with information from the medical record to validate responses. Results: Following the item development and the three iterations of the scale, version 3 was examined in a more intensive fashion. The current version of the UNC TR_xANSITION Scale comprises 33 items scattered across the following 10 domains: Type of illness, Rx=medications, Adherence, Nutrition, Self-management, Informed-reproduction, Trade/school, Insurance, Ongoing support, and New health providers. It requires approximately 7–8 min to administer. With a sample of 128 adolescents and young adults, ranging in age from 12 to 20, inter-rater reliability was strong (r = 0.71) and item-total correlation scores were moderate to high. Content and construct validity were satisfactory, and the overall score was sensitive to advancing age. The univariate linear regression yielded a beta coefficient of 1.08 (p < 0.0001), indicating that the total score increased with advancing age. Specifically, there was about a one point increase in the total score for each year of age. Conclusion: The UNC TR_xANSITION Scale is a disease-neutral tool that can be used in the clinical setting. Initial findings suggest that it is a reliable and valid tool that has the potential to measure health-care transition skill mastery and knowledge in a multidimensional fashion.

• transition
• transition scale
• adolescents
• young adults
• emerging adults
• health-care transition
• disease self-management
• transition tool

ACKNOWLEDGMENTS

We thank our patients and their parents/caregivers for the time and invaluable information they volunteered to assist us in this endeavor. Our appreciation is also extended to our interdisciplinary team, with special contributions from Carolyn Viall, RN, MSN; Sohini Sengupta, PhD; Sue Tolleson-Reinhart, PhD; Caroline E. Jennette, MSW; Nicole Fenton, MA; Edward Iglesia; Sandra Kim, MD; Maureen Kelly, ANP; Kara Bozik, PharmD; William Primack, MD; William Conley, MD; Keisha Gibson, MD, MPH; Carolyn Zook, PNP; Cindy Reilly, PNP; Patricia Jones, MD; Elizabeth Prata, NP; Claudia Rojas; Anne Stephens, MD, MPH; Teresa Edwards; Jim O’Neill; Bob Imperial; Keith Gerarden; Julie Byerley, MD; Michael Steiner, MD; Richard Goldman, MD; Randy Detwiler, MD; Clara Neyhart, RN; and Ronald Falk, MD. We also thank the following health-care transition experts for their advice and guidance: Betty Pressler, RN, PhD; Cecily Betz, PhD; John Reiss, PhD; Janet E. McDonagh, MD; Patience White, MD; Alan Watson, MD; Lorraine Bell, MD; and Niki Becker, MD.