source: American Society of Pediatric Hematology/Oncology

year: 2016

authors: Sherif M. Badawy, Alexis A. Thompson, Robert I. Liem

Background: SCD-related complications result in significant declines in health-related quality of life and other patient-reported outcomes (PROs). However, PROs are not routinely monitored in the SCD-clinic setting. Hydroxyurea reduces complications, decreases hospitalizations and improves PROs in SCD patients. Yet hydroxyurea adherence remains suboptimal, especially among adolescents and young adults (AYA) with SCD. No previous studies have addressed the relationship between hydroxyurea adherence and PROs.

Objectives: To assess the feasibility of evaluating PROs and hydroxyurea adherence in AYA with SCD in the outpatient setting, and 2) To explore the relationship between PROs and hydroxyurea adherence.

Design/Method: A cross-sectional survey was administered on electronic tablets to 34 AYA (12-22 years old, all genotypes) on steady state hydroxyurea in our SCD clinic from January through December 2015. PROs were assessed by Patient Reported Outcomes Measurement Information System (PROMIS) – Computerized Adaptive Testing (CAT), and hydroxyurea adherence was assessed using the Modified Morisky Adherence Scale-8.

Results: At survey time, participants (52% male, 89% Black, 89% Hb SS, mean 15±3.3 years) had taken hydroxyurea at a mean dose of 32.5±4.9 mg/kg/day for an average of 15±8.6 months, most commonly for recurrent pain. All patients approached agreed to participate and successfully completed all assessments during their clinic visits, meeting our feasibility criterion of a >=85% completion rate. The average time to complete PROMIS-CAT was 61±30 seconds/instrument. Participants with low hydroxyurea adherence, compared to moderate/high adherence, had significantly worse mean fatigue (54.4 vs. 33.5, p<0.001) and depression (48.4 vs. 34.4, p=0.04) scores. Participants with fetal hemoglobin (Hb F) <10%, compared to >=10%, had significantly worse mean fatigue (60 vs. 47.4, p=0.03) and peer relationship (58.5 vs. 45.7, p=0.006) scores. Mean PROs scores did not correlate with mean Hb, Hb F, hydroxyurea dose or duration.

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