Validation of EpiTRAQ, a transition readiness assessment tool for adolescents and young adults with epilepsy

Abstract

Objective To design and validate a transition readiness assessment tool for adolescents and young adults with epilepsy and without intellectual disability. Methods We adapted a general transition readiness assessment tool (TRAQ) to add epilepsy‐relevant items based on concepts in current epilepsy quality measures. The adapted tool, EpiTRAQ, maintained the original structure and scoring system. Concurrent with clinical implementation in pediatric and adult epilepsy clinics at an academic medical center, we assessed the validity and reliability of this adapted tool for patients 16‐26 years of age. This process included initial validation with 302 patients who completed EpiTRAQ between October 2017 and May 2018; repeat validation with 381 patients who completed EpiTRAQ between June 2018 and September 2019; and retest reliability among 153 patients with more than one completed EpiTRAQ. Results Mean scores were comparable between initial and repeat validation populations (absolute value differences between 0.05 and 0.1); internal consistency ranged from good to high. For both the initial and repeat validation, mean scores and internal consistency demonstrated high comparability to the original TRAQ validation results. Upon retest, few patients rated themselves with a lower score, while the majority rated themselves with higher scores. Significance EpiTRAQ is a valid and reliable tool for assessing transition readiness in adolescents and young adults with epilepsy and without intellectual disability.

“I Have Eight Different Files at Eight Different Places”: Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services

“…Moreover, the timing of the transition should also consider individual circumstances. Individual circumstances for consideration include the degree to which youth wish for their parents to be involved, family caregivers’ perspectives of the need to be involved, and the ability of adult service providers to meet the holistic needs of youth [ 36 ]. Future studies should describe the characteristics of families so that transition programs can be developed that are flexible enough to address unique family circumstances and help with changes in responsibilities [ 37 ].…”

Hungarian Linguistic, Cross-Cultural and Age Adaptation of Transition Specific Questionnaires in Patients with Inflammatory Bowel Disease

“…The TRAQ survey was validated for adolescents with cystic fibrosis in the United States [ 28 ]. The questionnaire was used internationally, e.g., USA, England, Canada, and Italy, [ 28 , 36 , 37 , 38 , 39 , 40 , 41 , 42 ] and adapted for other chronic conditions, but an adaptation of IBD is still missing [ 11 , 43 , 44 , 45 , 46 ]. Adapted versions are available in Spanish for patients diagnosed with various chronic diseases, in Thai, and Brazilian-Portuguese for rheumatologic disorders, for the American pediatric population with epilepsy, and in Turkish for adolescents with diabetes [ 11 , 43 , 44 , 45 , 46 ].…”

Efficacious interventions for improving the transition readiness of adolescents and young adult patients with chronic illness: A narrative review of randomized control trials assessed with the transition readiness assessment questionnaire

“…We recommend the use of general quality of life scales as well as disease-specific scales for condition assessment (40)(41)(42). Disease-specified TRAQ can assess a disease-specific issue (43)(44)(45). The status or events of the disease can also be used to assess disease-specific issues from the current studies (22,23).…”