Global Sickle Cell Quality of Life: Oral Pain Medication Frequency, Health Outcomes, and Emotional Well-Being

Background: Sickle cell disease (SCD) profoundly affects physical health, emotional well-being, and overall quality of life(QOL). Oral pain medication (OPM) use is essential to manage vaso occlusion in SCD and is a key utilization metric for disease severity and management effectiveness. Understanding how this frequency relates with health status, treatment practices, and psychosocial factors may explain unmet needs in these regions and help direct public policy. We investigated the relationships between frequency of OPM usage and key physical, psychosocial health metrics, and satisfaction with medical care among people with SCD (PWSCD) globally.

Method: Data were gathered from 110 PWSCD from 5 continent's, divided by their frequency of needing OPM (NSAIDS and/or opioids): once a week (n=88) and once a month (n=21). Variables assessed included self-reported health status, symptoms (pain, fatigue, jaundice, etc.) hospitalizations, school attendance, and various treatments (Hydroxyurea (HU), folic acid (FA), blood transfusions, Penicillin (PCN)). Additionally, emotional well-being, participation in social activities, and satisfaction with medical care were examined. Chi-square tests were employed to analyze associations between these factors and pain medication frequency.

Results: The sample was predominantly female (64.5%), mean age = 24.06 years (SD=11.56), and the majority were self-respondents (70.9%), with the remainder responding on behalf of a child (21.8%) or through a healthcare provider (7.3%). Geographically from 11 countries, the largest representation was from Zambia (41.8%), followed by Malawi (17.3%) and Nigeria (11.8%). Access to care data from some of these low middle income countries (LMIC) were striking. Most participants lacked insurance coverage for all SCD-related costs (81.8%). The SS genotype was most common (54.5%), but nearly a quarter indicating sickle cell type as unknown (26.4%). Most participants were in the low-middle income level (45.5%). PWSCD who needed pain medication weekly reported poorer overall health compared to those needing it monthly (p < 0.001). Interestingly, a smaller percentage of weekly medication users rated their health as “very good” (5.7% vs. 23.8%) and most rated it as “fair” (55.2% vs. 4.8%). Pain, fatigue, and jaundice were significantly higher among those using pain medication weekly (pain: 92.0% vs. 66.7%, p = 0.002; fatigue: 76.1% vs. 47.6%, p = 0.01; jaundice: 47.7% vs. 23.8%, p = 0.047).

Frequent medication users also had more hospitalizations per year (≥4 times per year: 42.0% vs. 4.8%, p = 0.01) and missed more school due to SCD complications (p = 0.008). Treatment patterns showed that HU was more commonly used among those needing pain medication weekly (48.2% vs. 33.3%, p = 0.218), while the use of FA was similar across both groups (80.7% vs. 81.0%, p = 0.977). Interestingly, need for blood products did not differ significantly between the groups (59.8% vs. 47.6%, p = 0.594).

Emotional well-being assessments indicated that weekly OPM users were significantly less likely to report feeling happy always/often compared to those using it monthly (27.3% vs. 66.7%, p = 0.001). Furthermore, those needing pain medication more frequently had greater difficulty regulating emotions (p = 0.016) and reported greater daily impact of SCD on their happiness (p = 0.007). Participation in social activities was lower among frequent medication users (p = 0.022), and satisfaction with medical care was significantly higher in the less frequent medication group (p = 0.001).

Discussion: In the first of its kind, this global study highlights significant differences according to the frequency of OPM in health-related and psychosocial factors in PWSCD. Conducted globally this study validates that frequent use of pain medication is a predictor of poorer health, severe SCD phenotype, increased hospitalizations, and greater impacts on daily life in low and high income countries alike but more pronounced in LMIC. Emotional and social well-being and satisfaction with medical care, are also affected. These key findings identify a global theme of OPM as an indicator of QOL and health care utilization observed in low- and high-income settings consistently. This suggests the need for investment into comprehensive care that addresses both physical and psychosocial factors to reduce OPM use.

Jain:Hemex Health: Consultancy; Sanofi: Speakers Bureau; NovoNordisk: Speakers Bureau; Beam Therapeutics: Other: End point adjudication committee; Blue Bird Bio: Other: End point adjudication committee .