Key Findings
- Purpose
To examine individual and community factors associated with resilience among adults with SCD, including individual, healthcare, relationship, community, and economic factors, guided by Aday’s Framework for Studying Vulnerable Populations.
- Population (Model)
Secondary analysis of the cross-sectional INSIGHTS study involving 276 adults with SCD recruited through convenience sampling at two U.S. sites: the National Institutes of Health Clinical Center in Bethesda, Maryland, and the Montefiore Sickle Cell Center for Adults in the Bronx, New York. Mean age was 39.67 years; 55.4% were female, 97.0% identified as Black/African American, 73.3% reported annual household income below $60,000, and 54% used government-funded insurance.
- Headline Result
Resilience was significantly associated with physical function (P=.021), perceived illness threat (P<.001), relationship stress (P<.001), consistently positive provider communication (P=.038), healthcare satisfaction (P=.005), congregational support (P=.007), neighborhood stress (P=.011), and household income (P=.006). Higher physical function, positive provider communication, healthcare satisfaction, congregational support, and higher household income were associated with higher resilience, whereas greater perceived illness threat, relationship stress, and neighborhood stress were associated with lower resilience. Among continuous predictors, perceived illness threat showed the largest reported association with resilience. Household income showed a significant association with resilience after controlling for neighborhood stress, with participants reporting household income of $90,000 or more having higher resilience than those reporting $29,000 or less. - Why It Matters
The findings suggest that resilience among adults with SCD is associated with factors extending beyond individual coping, including physical function, perceived illness threat, healthcare relationships, congregational support, and economic and neighborhood circumstances. However, the analysis was observational, with several predictors examined primarily using bivariate analyses; the study does not establish that changing any individual factor would cause resilience to change.
- Evidence Gaps & Limitations
This was a cross-sectional secondary analysis using convenience sampling at two U.S. sites, limiting generalizability and preventing determination of causality or temporal relationships. The study did not assess whether resilience predicted later clinical outcomes such as hospitalization, vaso-occlusive crises, organ complications, survival, or quality of life.
Source: Journal of Sickle Cell Disease- “Beyond the blood disorder: unlocking the individual and community factors that build resilience in adults with sickle cell”
Regulatory & Guideline Watch
American Society of Hematology (ASH) 2020 guideline on the management of acute and chronic SCD pain states that routine screening for depression and anxiety, along with targeted screening for other psychological comorbidities, is good practice in the context of SCD pain. The guideline also supports interdisciplinary, patient-centered pain care. The guideline is specifically focused on pain management and does not establish resilience as a clinical treatment target.
National Heart, Lung, and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease Expert Panel Report, 2014 includes continuing assessment of social circumstances, psychological assessment and support, preventive care, and patient education alongside disease-specific management. The guidance is intended to support routine health maintenance and management of acute and chronic SCD complications and comorbidities across the lifespan.