Health-Related Quality of Life in Persons with Sickle Cell Disease
Author(s)
Lanzkron S1, Crook N2, Wu J3, Hussain S1, Curtis RG4, Robertson D5, Baker JR2, Nugent D2, Soni A2, Roberts J6, Ullman MM7, Nguyen A8, Agodoa I8, Nichol M3
1Johns Hopkins School of Medicine, Baltimore, MD, USA, 2Center for Inherited Blood Disorders, Orange, CA, USA, 3University of Southern California, Los Angeles, CA, USA, 4Factor VIII Computing, Berkeley, CA, USA, 5The Maryland Sickle Cell Disease Association, Inc, Columbia, MD, USA, 6Bleeding & Clotting Disorders Institute, Peoria, IL, USA, 7Gulf States Hemophilia & Thrombophilia Center, University of Texas health Science Center at Houston, Houston, TX, USA, 8Global Blood Therapeutics, South San Francisco, CA, USA
OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Fatigue, MHC, hospitalization and chronic pain negatively impact HRQoL. Next steps are to evaluate the economic burden of illness on people with SCD.
Conference/Value in Health Info
2021-05, ISPOR 2021, Montreal, Canada
Value in Health, Volume 24, Issue 5, S1 (May 2021)
Code
PRO66
Topic
Clinical Outcomes, Patient-Centered Research
Topic Subcategory
Clinical Outcomes Assessment, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Rare and Orphan Diseases
Explore Related HEOR by Topic
