(1034) Evaluation of the Health Related Quality of Life Using the ASCQ ME Questionnaire in Patients with Sickle Cell Disease

Objectives: Sickle Cell Disease (SCD) is a hematological disorder that is prevalent in individuals of African descent and those with ancestors from the Middle East, Mediterranean basin, and India. It is characterized by HbS polymerization, vaso-occlusion, and hemolysis-mediated endothelial dysfunction which leads to acute and chronic complications. The complications of SCD often worsen with age and involve multiple organ systems in the body. Having multiple acute and chronic complications such as vaso-occlusive crises and chronic pain have been associated with decreased quality of life. Therefore, the main objective of the study was to assess the pain scores and quality of life patients with SCD.

Methods: This was a prospective cohort study of patients living with SCD at an urban university teaching hospital. It included males and females who were older than 18 years of age and came to the outpatient sickle cell clinic from July 2022 to December 2023. Participants who declined to consent, and those who were younger than 18 years of age were excluded from the study. The primary outcome of this study was the quality of life of the patients with SCD. The participants completed an ASCQ ME questionnaire which took about 10 – 15 minutes to complete. The questionnaire consists of the SCD Medical History Checklist, Pain Episodes Frequency and Severity (5 items), Emotional Impact (5 items), Pain Impact (5 items), Sleep Impact (5 items), Social Functioning Impact (5 items) and Stiffness Impact (5 items). The last 5 are scored on a scale from 1 (always) to 5 (never). Scores on the subscales are standardized to have a mean of 50 and a standard deviation of 10. Descriptive statistics were conducted to characterize the patient’s baseline and clinical characteristics. A multivariate linear regression analysis will be conducted to determine which factors are predictive of their pain scores and quality of life scores after adjusting for other variables.

Results: There were about 50 participants who participated in the analysis. Approximately, 28 (56%) of them were female, and they had a mean age of 46 + 13.21. All of the participants self-identified as Black or African American, and about 37 (74%) had public insurance such as Medicare, Medicaid, or both. Altogether, 29 (58%) of the participants had the HbSS genotype, and 23 (46%) were unemployed. The mean T score at baseline for the pain impact was 46.83 + 8.03. The most commonly reported pain score at baseline was 10 on a scale of 1-10 and this occurred in 15 (30%) of the total sample. The pain crises lasted between 1-3 days in nearly half (44%) of participants. Approximately, 18 (36.0%), 15 (30.0%), and 3 (6.0%) of participants reported that their health slowed them down sometimes, often, or always respectively. Many of the participants, (42.0%) reported that their health sometimes made it hard for them to do things and there were quite a few (44.0%) who indicated that their health or kept them from going out. The mean emotional impact T score was 48.39 + 8.16 with a range of scores from 26.8 to 65.5.

Conclusions: Participants with SCD often reported having higher pain scores as well as having impaired emotional and physical health thus leading to lower quality of life scores.