Development of the Ottawa Disordered Eating Screen for Youth: The ODES-Y.

OBJECTIVE: To develop a concise screening tool that allows for early identification of disordered eating in youth. STUDY DESIGN: In this 2-step classification accuracy study, questions for the Ottawa Disordered Eating Screen-Youth, a 2-question screening tool (index test), were conceptualized by clinician-scientists from tertiary care pediatric eating disorder and weight-related clinics, and was validated using retrospective data (2004-2010) from a community-based study, the Research on Eating and Adolescent Lifestyles (REAL) study. RESULTS: Analyses of contrast between the index test and the reference standard using data from 2892 (1714 females) students between grade 7 and grade 12 revealed classification statistics of 67.1% for sensitivity, 85.9% for specificity, 4.7 for positive likelihood ratio, 0.38 for negative likelihood ratio, 50.6% for positive predictive value, and 92.4% for negative predictive value for females and 61.1% for sensitivity, 93.9% for specificity, and 9.9 for positive likelihood ratio, 0.41 for negative likelihood ratio, 32.3% for positive predictive value, and 98.0% for negative predictive value for males. CONCLUSIONS: Our findings suggest that the index test has utility as a short and accurate screening tool for earlier detection of disordered eating thoughts and behaviors in youth. Additional research is needed to best determine how the index test can be administered to youth across various health care, school, public health, and surveillance settings in clinically sensitive pragmatic ways.

Transition Readiness in Adolescents and Young Adults with Heart Disease: Can We Improve Quality of Life?

OBJECTIVES: We previously reported common knowledge deficits and lack of transition readiness in 13- 25-year-olds with congenital or acquired heart disease. The aims of this study were to re-evaluate transition readiness in this cohort at follow-up and to examine the relationship between changes in transition readiness and quality of life (QOL). STUDY DESIGN: In this prospective cohort study, patients completed the Transition Readiness Assessment and the Pediatric Quality of Life Inventory using an e-tablet, web-based format at a routine follow-up visit. Changes from initial to follow-up scores were evaluated. RESULTS: Sixty-five percent of patients (106 of 164) completed follow-up assessments at a median age of 18.7 years (IQR, 16.5-21.2 years) at a median follow-up of 1 year. The average perceived knowledge deficit score (percent of items with no knowledge) at follow-up was 18.0 ± 15.2%, which decreased from 24.7 ± 16.5% (P < .0001). On a 100-point scale, the mean score for self-efficacy increased from 71.4 ± 17.0 to 76.7 ± 18.2 (P = .0004) and for self-management increased from 47.9 ± 18.4 to 52.0 ± 20.7 (P = .004). Although physical QOL did not change, the mean psychosocial QOL score increased significantly (P = .02). A decrease in the knowledge deficit score at follow-up was significantly associated with an increased psychosocial QOL score (P = .03). An increase in the self-efficacy score was associated with an increase in psychosocial QOL score (P = .04), especially social QOL (P = .02). CONCLUSIONS: Although deficits in knowledge and self-management skills persist, transition readiness assessment and recognition of deficits can improve transition readiness with improved psychosocial QOL.

Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease.

OBJECTIVES: To evaluate transition readiness, including perceived knowledge deficits, self-efficacy, and self-management behaviors, in 13- to 25-year-olds with congenital heart disease or heart transplant and to examine the relationships between transition readiness assessment, information seeking behavior, and quality of life (QOL). STUDY DESIGN: In this cross-sectional study, patients (n = 164) completed the Transition Readiness Assessment and the Pediatric Quality of Life Inventory using an e-tablet, web-based format at a routine clinic visit. RESULTS: Median patient age was 18.1 years (range 13.0-25.5). Average perceived knowledge deficit score (% of items with no knowledge) was 25.7% (range 0%-75%). On a 100-point scale, the mean score was 72.0 ± 17.2 for self-efficacy and 49.7 ± 17.5 for self-management. Knowledge deficits were negatively correlated with self-efficacy (r = -0.45, P < .0001) and self-management (r = -0.36, P < .0001). Overall, 66% of patients requested information (73% ≥ 18 years old). Higher psychosocial QOL scores were correlated with lower knowledge deficit scores (r = -0.21, P = .01) and higher perceived self-efficacy scores (r = 0.41, P < .0001). CONCLUSIONS: Transition knowledge deficits are common and associated with decreased self-efficacy and self-management skills in adolescents and young adults with heart disease. Greater transition knowledge and perceived self-efficacy are associated with better psychosocial QOL. Routine assessment of transition readiness is recommended to facilitate recognition of deficits and interventions to promote successful transition outcomes.

Prevalence and patterns of retention in cardiac care in young adults with congenital heart disease.

The population with adult congenital heart disease is expanding. Cardiac care retention and follow-up patterns were assessed in 153 adults with congenital heart disease (median age, 24.5 years), previously compliant as teenagers. The majority (125; 81.7%) were retained in care, most often by a pediatric cardiologist (69%). The rate of retention was surprisingly high.