Assessment of Transition Readiness to Predict Health Care Utilization During Transition to Adult Care in Sickle Cell Disease

Overview

Journal Expert Rev Hematol

Specialty Hematology

Date 2022 Nov 10

PMID 36356169

Authors

Kristen E Howell

Andrew M Heitzer

Jennifer N Longoria

Brian Potter

Winfred C Wang

Sheila Anderson

Guolian Kang

Jane S Hankins

Jerlym S Porter

Affiliations

Soon will be listed here.

Abstract

Background: Transition-age patients with sickle cell disease (SCD) are at risk for poor outcomes associated with incomplete transition readiness and neurocognitive deficits. Study objectives were to: 1) test if a SCD-specific measure of self-management skills was associated with transition outcomes and 2) evaluate if caregiver-reported executive functioning was associated with self-management skills and transition outcomes among youth with SCD.

Research Design And Methods: Youth/caregivers were selected from a longitudinal cohort study. Caregivers completed the Behavior Rating Inventory of Executive Function (BRIEF); caregivers and youth completed the Self-Management Skills Checklist (SMSC) at a median age of 16.8 ± 0.6 years. Non-parametric tests compared SMSC and transition outcomes. Regression assessed the incremental validity of SMSC in predicting transition outcomes.

Results: In total, 95 participants (54% male, 55% severe genotype) completed the SMSC assessment. Most participants (87%) transferred to adult care within six months and 87% were retained for at least 12 months. BRIEF and caregiver-reported SMSC assessments were weakly, negatively correlated (ρ = -0.25, p = 0.0392) but were not significant in predicting transition outcomes (p > 0.05).

Conclusions: The SMSC and executive function did not predict adult care engagement. Development of readiness assessments that predict care engagement and reflect self-efficacy is important for monitoring transition-aged patients with SCD.

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