Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness

Marianne McPherson, Lisa Thaniel, Caterina P Minniti
Pediatric Blood & Cancer 2009, 52 (7): 838-41

BACKGROUND: Transfer of care from pediatric to adult-oriented providers is challenging for adolescents with sickle cell disease (SCD). The need for transition programs is known, however many SCD patients leave pediatric care without adequate preparation. This study has two aims: to assess adolescent SCD patients' preparation for transition and to identify variables that predict patient readiness.

PROCEDURE: Adolescent patients receiving care at a pediatric SCD center received a survey regarding essential steps of the transition process. Patients' level of prior thought, interest, anticipated difficulty, and perceived importance of transition were graded on a scale of 0 to 3. Knowledge of individual transition plans was scaled 0 to 4. Responses were analyzed according to age, sex, and disease severity.

RESULTS: Seventy patients ages 14 to 20 years (median 16.7 years) were assessed. Mean readiness scores were low, with greatest deficiencies in prior thought (mean 0.88 [0.66-1.09]), knowledge (mean 0.85 [0.61-1.09]), anticipated difficulty (mean 1.42 [1.23-1.61]), and interest (mean 1.71 [1.47-1.95]). Perceived importance of transition received the highest score (mean 2.71 [2.58-2.84]). Younger age (<or=16 years) was associated with less knowledge (P = 0.003) and interest (P = 0.023); disease severity (>or=3 crises/year) was associated with lower interest (P = 0.043) but greater anticipated difficulty (P = 0.001). Anticipated difficulty trended higher among females (P = 0.028).

CONCLUSIONS: Adolescents with SCD acknowledge the importance but demonstrate poor preparation for transition to adult-oriented care. Readiness improves with age but remains insufficient. This analysis highlights the need for improvements in anticipatory guidance for transition during adolescence.

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