PRO66 Health-Related Quality of Life in Persons with Sickle Cell Disease

Abstract

Investigate factors associated with health-related quality of life (HRQoL) and economic burden in persons with sickle cell disease (SCD). Here we present HRQoL data. Between July 2019 and August 2020, we recruited 32 adults aged ≥18 years with a diagnosis of SCD. We collected data on patient socio-demographics, fatigue, and HRQoL measured by the EQ-5D-3L and Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) via patient survey. Number of hospitalizations from the prior 12 months was obtained from chart review. Factors associated with HRQoL scores were assessed by Pearson correlation. Mean age was 36.7±10.6 (standard deviation) years, 65.6% of the sample was female, 84.4% had identified hemoglobin (Hb)SS/Sßthal0 disease, 81.3% reported chronic pain (experiencing pain on ≥3 days per week in the past 6 months). Mean EQ-5D VAS was 63.4, lower than the U.S. 35-44 age mean of 81.8. Mean EQ-5D index score was 0.79, lower than the U.S. 35-44 age group population norm (0.85). ASCQ-Me scores are comparable to the referent population of adults with SCD. Mean fatigue score was 57.9, ranged 33.7-75.9, and was negatively correlated with the EQ-5D index score (correlation coefficient r=-0.35, p=0.049), and ASCQ-Me scores, including pain (r=-0.47, p=0.006), sleep (r=-0.38, p=0.03), and emotion (r=-0.79, p<0.0001). Medical history checklist (MHC) score (sums 9 SCD complications and treatment history) was negatively correlated with EQ-VAS (r=-0.53, p=0.002), EQ-index score (r=-0.50, p=0.004), ASCQ-Me pain (r=-0.41, p=0.02), and stiffness (r=-0.63, p=0.0001). Number of hospitalizations was negatively correlated with HRQoL (all p<0.05). Patients who reported chronic pain had significantly lower mean ASCQ-Me sleep score (48.3±10.1 vs. 57.1±9.1, p=0.04) and EQ-5D index score (0.72±0.21 vs. 0.89±0.09, p=0.002) than those without chronic pain. Fatigue, MHC, hospitalization and chronic pain negatively impact HRQoL. Next steps are to evaluate the economic burden of illness on people with SCD.