The UNC T.RxA.N.S.I.T.I.O.N. Scale™: A tool to measure the process of health care transition for adolescent IBD patients

Abstract

INTRODUCTION: Inflammatory bowel diseases (IBD) are chronic, relapsing diseases with significant morbidity. A major challenge in managing adolescent patients with chronic diseases, such as IBD, is successfully transitioning them to adult care. SPECIFIC AIM: To measure the mastery of skills for health care transition amongst adolescents with IBD. METHODS: We administered the UNC TRxANSITION.Scale(trademark), a scoring system which utilizes the ten letters of the word nulltransitionnull and encompasses 10 global skills (33 questions) adolescents and young adults with a chronic illness need to acquire before they transfer to adult health providers. One research coordinator was responsible for enrolling participants, and digitally recording these interviews. To further confirm reliability and reproducibility, two independent and blinded researchers scored 35 of the TRxANSITION.Scale(trademark) digital recordings. Each participant's answers were scored based on their knowledge in each area: 0 = none, 0.5 = some knowledge, 1 = adequate knowledge. Sub-section and total scores were used as outcome variables in separate regression models with age as a predictor. Differences between mean scores by other demographic factors were compared with ANOVA, and differences in distribution of categorical measures were calculated with chi-square tests. RESULTS: 94 adolescents between 12.2-20.8 years of age (45% male,55%female;mean age 15.2(plus or minus)1.9 yrs) completed this study. 70%were Caucasian, 23%were African-American, and 5% were in other racial groups. 76% had Crohn's, 23% had ulcerative colitis (UC), and1%had indeterminate colitis. 22% had 1 caregiver, 26% had public insurance (Medicare/Medicaid), 72% had private insurance and 2% were self-pay. Inter-rater reliability revealed a weighted Kappa statistic of 0.65 (95%CI: 0.61, 0.70). The mean TRx- ANSITION.score for all patients was 6.18 ((plus or minus)1.35) out of 10; scores ranged from 5.1 to 9.0, with a median score of 6.31. Participants had lowest scores in self-management and reproduction issues. Highest scores were measured in patient's knowledge of type of illness, medications, adherence, nutrition, and ongoing support. Transition score did not differ by gender, race, number of caregivers, or number of oral daily medications. Patients who had private insurance had a significantly greater TRxANSITION score versus patients on public insurance, or self-pay (Private insurance: 6.4(plus or minus)1.3; Public/ self-pay: 5.5(plus or minus)1.3; p=0.003). CONCLUSION: In this pilot study, insurance status appears to impact mastery of health care transition skills as measured by the UNC TRxANSITION.Scale(trademark). Further analysis and validation of this tool are currently being conducted. Assessing the areas where adolescents need help in transition, and addressing these gaps in knowledge are critical to prevent complications of IBD and to ensure comprehensive care once these adolescents reach adulthood.