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

Objective: To describe the development of the University of North Carolina (UNC) TRxANSITION 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 TRxANSITION 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 TRxANSITION 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 TRxANSITION 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.

[1]  J. Telfair,,et al.  Transfer as a component of the transition of adolescents with sickle cell disease to adult care: adolescent, adult, and parent perspectives. , 1994, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[2]  R. Gibson,et al.  Health care transition: destinations unknown. , 2002, Pediatrics.

[3]  M. Oermann,et al.  Indicators of quality of care in clinics: patients' perspectives. , 2000, Journal for healthcare quality : official publication of the National Association for Healthcare Quality.

[4]  Ann L. Brown,et al.  How people learn: Brain, mind, experience, and school. , 1999 .

[5]  S. Hooper,et al.  Health care transition for adolescents with CKD-the journey from pediatric to adult care. , 2011, Advances in chronic kidney disease.

[6]  C. Betz.  CALIFORNIA HEALTHY AND READY TO WORK TRANSITION HEALTH CARE GUIDE: Developmental Guidelines for Teaching Health Care Self-Care Skills to Children , 2000, Issues in comprehensive pediatric nursing.

[7]  J. Magee,et al.  Assessment of transition readiness skills and adherence in pediatric liver transplant recipients , 2010, Pediatric transplantation.

[8]  L. Wiener,et al.  Transition from a Pediatric HIV Intramural Clinical Research Program to Adolescent and Adult Community-Based Care Services , 2007, Social work in health care.

[9]  E. Deci,et al.  Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. , 2000, The American psychologist.

[10]  E. Deci,et al.  Testing a self-determination theory process model for promoting glycemic control through diabetes self-management. , 2004, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[11]  D. Rosen.  Transition of young people with respiratory diseases to adult health care. , 2004, Paediatric respiratory reviews.

[12]  M. Oermann,et al.  Teaching by the nurse: how important is it to patients? , 2001, Applied nursing research : ANR.

[13]  J. Kelley,et al.  Identification of Medical and Nonmedical Needs of Adolescents and Young Adults With Spina Bifida and Their Families: A Preliminary Study , 1998 .

[14]  P. McGrath,et al.  Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. , 1989, Children's health care : journal of the Association for the Care of Children's Health.

[15]  S. Sawyer,et al.  Transition from pediatric to adult services: are we getting it right? , 2008, Current opinion in pediatrics.

[16]  R. Blount,et al.  Getting ready to leave: transition readiness in adolescent kidney transplant recipients. , 2012, Journal of pediatric psychology.

[17]  P. Kimmel,et al.  Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America , 2006, Pediatric Nephrology.

[18]  William Livingood,et al.  Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. , 2011, Journal of pediatric psychology.

[19]  C. Betz.  TRANSITION OF ADOLESCENTS WITH SPECIAL HEALTH CARE NEEDS: REVIEW AND ANALYSIS OF THE LITERATURE , 2004, Issues in comprehensive pediatric nursing.

[20]  Susan M Sawyer,et al.  Adolescents with a chronic condition: challenges living, challenges treating , 2007, The Lancet.

[21]  P. Fastenau,et al.  Adolescents with myelomeningocele: activities, beliefs, expectations, and perceptions. , 2004, Developmental medicine and child neurology.

[22]  P. White,et al.  Transition to adulthood. , 1999, Current opinion in rheumatology.

[23]  Sylvia Tan,et al.  SELF-REPORTED HEALTH CARE SELF-CARE NEEDS OF TRANSITION-AGE YOUTH: A PILOT STUDY , 2003, Issues in comprehensive pediatric nursing.

[24]  K. Blomquist,et al.  Transitioning to Independence: Challenges for Young People with Disabilities and their Caregivers , 1998, Orthopedic nursing.