Development and validation of the sickle cell stress scale‐adult

Disease‐specific stress can partly explain Sickle Cell Disease (SCD) healthcare utilization. We developed and validated two measures of adult SCD‐specific stress for research and clinical care. A large cohort of adults with SCD completed both the 3‐item Likert‐scale adapted from a previous disease stress measure and a 10‐item Likert‐scale questionnaire drafted specifically to measure SCD stress. They concurrently completed a psychosocial and health‐related quality of life scale battery, then subsequently daily pain diaries. Diaires measured: daily intensity, distress and interference of pain; self‐defined vaso‐occlusive crises (VOC), opioid use, and types of healthcare utilization for up to 24 weeks. Analyses tested Cronbach's alpha, correlation of the three‐item and 10‐item stress scales with the concurrent battery, with percentages of pain days, VOC days, opioid use days, and healthcare utilization days, and correlation of baseline stress and 6‐month stress for the 10‐item scale. Cronbach's alpha was high for both the 3‐item (0.73) and 10‐item (0.83) SCD stress scales, test–retest correlation of 0.55, expected correlation with the concurrent battery, and correlation with diary‐measured healthcare utilization over 6 months. The correlations with the 3‐item scale were stronger, but only statistically significant for depression‐anxiety. The correlation between the two stress scales was 0.59. Both the 3‐item and the 10‐item stress scales exhibited good face, construct, concurrent, and predictive validity as well as moderate test–retest reliability. Further scale validation should determine population norms and response to interventions.