The goal is to improve the delivery of care and outcomes for patients with epilepsy as they transition from pediatric to adult care settings, where there is often less oversight.
Sarah J. Clark, MPH
Multiple repeated validation tests to assess an adapted version of the transition readiness assessment tool (TRAQ) that includes epilepsy-relevant items based on concepts in current epilepsy quality measures demonstrated validity and reliability in the assessment of transition readiness in adolescents and young adults with epilepsy without intellectual disability.1
The adapted tool, called EpiTRAQ, maintained the original structure and scoring system of TRAQ and was assessed for validity and reliability in patients age 16 to 26 years via an initial validation and a repeat validation. The initial validation included 302 patients who completed EpiTRAQ between October 2017 and May 2018, and the repeat validation included 381 patients who completed EpiTRAQ between June 2018 and September 2019. To assess the reliability of EpiTRAQ over time, researchers analyzed results patterns for 153 patients who completed 2 or more EpiTRAQ forms between October 2017 and May 2019.
Sarah J. Clark, MPH, associate director, C.S. Mott Children’s Hospital National Poll on Children’s Health, and colleagues found mean scores to be comparable between initial and repeat validation populations (absolute value differences between 0.05 and 0.1) from the original TRAQ validation results, with internal consistency ranging from good to high.
Results from the initial assessment were presented at 2019 Child Neurology Society Annual Meeting, October 23—26, 2019, in Charlotte, North Carolina. Overall, the average score across all items was 3.73 for EpiTRAQ versus 3.86 for TRAQ. The internal consistency of domains with additional EpiTRAQ questions was “good” for managing medications (Chronbach’s Alpha [CA], 0.78), and “very good” for tracking health issues (CA, 0.82) and managing daily activities (CA, 0.85).2
The retest reliability of EpiTRAQ was strong, with over 80% of adolescent and young adults giving themselves higher ratings on at least 3 items at repeat validation, which occurred at least 6 months after the initial validation. Additionally, younger age was associated with an increase in scores from repeat validation to initial validation. Clark and colleagues noted that “in this population of patients 16‐26 years of age, we might expect more opportunities to increase knowledge and confidence in younger patients, who may be newly encountering the self‐management and knowledge concepts reflected in the EpiTRAQ items.”
TRAQ includes 20 items organized into 5 subscales: managing medications, appointment tracking, tracking health issues, talking with providers, and managing daily activities. Each TRAQ item is scored on a scale of 1—5, representing the lowest level to highest level of readiness, from least to most independent based.
Clark and colleagues reviewed 2014 and 2017 American Academy of Neurology (AAN) quality measures to improve the delivery of care and outcomes for patients with epilepsy with a strong construct validity with regard to the care and well-being of youth with epilepsy. AAN quality measures included seizure frequency for patients with epilepsy; counseling for women with childbearing potential with epilepsy; seizure intervention specified at each encounter; etiology, seizure type, and epilepsy syndrome specified at each encounter, querying; and personalized epilepsy safety issue and education provided yearly.
“For patients with epilepsy, lack of or poor transition may be associated with suboptimal seizure control, increased risk of sudden unexpected death in epilepsy (SUDEP), increased social isolation. Thus, an epilepsy‐specific transition readiness assessment tool is important to support the unique transition needs of this population, including condition‐specific knowledge and information that are not covered in general assessments,” Clark and colleagues concluded.
They went on to say that further studies are needed to explore the association with longitudinal changes in EpiTRAQ scores and clinical outcomes over time.
1. Clark SJ, Beimer NJ, Gebremariam A, et al. Validation of EpiTRAQ, a transition readiness assessment tool for adolescents and young adults with epilepsy. Epilepsia. Published online August 4, 2020. doi: 10.1002/epi4.12427
2. Joshi S, Clark S, Beimer N, et al. Developing an Instrument for Screening of Transition Readiness for Adolescents with Epilepsy. Presented at: Child Neurology Society 2019 Annual Meeting. October 23-26, 2019; Charlotte, NC. Abstract 50.