Elsevier

The Journal of Pediatrics

Volume 203, December 2018, Pages 361-370.e1
The Journal of Pediatrics

Original Articles
Longitudinal Self-Management and/or Transition Readiness per the TRxANSITION Index among Patients with Chronic Conditions in Pediatric or Adult Care Settings

https://doi.org/10.1016/j.jpeds.2018.06.052Get rights and content

Objective

To evaluate the roles of key individual, family, and illness characteristics on the levels of and gains in longitudinal healthcare transition (HCT) readiness in the pediatric setting and/or self-management skills (SMS) in the adult-focused setting, we used a large dataset with longitudinal measurements from 2006 to 2015.

Study Design

This longitudinal observational study followed 566 adolescents and young adults with chronic conditions at University of North Carolina Hospitals. TRxANSITION Index measurements, which represent learning outcomes rather than health outcomes, were collected multiple times per patient and analyzed using a novel application of an education-based approach.

Results

Levels of and gains in HCT/SMS scores increased with age (P < .001) with smaller increases at older ages. Mastery of skills varied by age with self-management achieved after 20 years of age. Scores varied positively by father's education and negatively by mother's education and duration of diagnosis. Gains in scores further varied positively with private insurance and negatively with mother's education and duration of diagnosis.

Conclusions

We found diminishing positive increases in HCT/SMS scores as patients become older and smaller levels of and gains in readiness among younger patients with more educated mothers. Risk factors for absolute level of HCT/SMS readiness and inadequate longitudinal gains are not always the same, which motivates a deeper understanding of this dynamic process through additional research. This information can guide providers to focus HCT/SMS preparation efforts on skills mastered at particular ages and to identify patients at risk for inadequate development of HCT/SMS skills.

Section snippets

Methods

This institutional review board–approved, longitudinal study included structured interviews and standardized readiness measurements (the TRxANSITION Index)14 administered by a trained provider to AYAs seen either in the pediatric- or adult-focused setting at the University of North Carolina Hospitals, a tertiary teaching medical center in the southeastern US from 2006 to 2015. Study participants reflect a convenience sample, where participants were enrolled consecutively during their normal

Results

Summary statistics for the demographic, educational, socioeconomic, and disease-related characteristics (ie, explanatory variables) of the study sample are depicted in Table I. Samples 1 (n = 566; score = 566) and 2 (n = 566; score = 1023) were analyzed cross-sectionally using the contemporaneous model and sample 3 was analyzed longitudinally (n = 232; score = 689) using the value-added model.

Discussion

This study characterizes longitudinal HCT skill knowledge by age in a sample of AYAs with various health conditions in both the pediatric- and adult-focused settings.35, 36 Our study benefited from electronic health records available since 1984, providing patient data on disease history. Using the disease-neutral TRxANSITION Index administered to a large heterogeneous sample of AYAs with different health conditions, we determined the individual, family, and illness correlates of these

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    The authors declare no conflicts of interest.

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