Risk factors and outcomes of high-impact chronic pain (HICP), ie, chronic pain (CP) and substantial restriction of participation in work, social, or self-care activities, are not known in sickle cell disease (SCD). The Sickle Pain-Related Impact (SPiRIt) study is the first prospective longitudinal study of HICP . Ninety persons with SCD and CP aged 16 to 40 years reported pain and pain-related outcomes at enrollment (T1) and at an optional 6-month timepoint (T2). We found that participants with HICP experienced greater pain burden, worse outcomes, higher pain catastrophizing, greater fear of movement, lower self-efficacy, and lower chronic pain acceptance compared with those with mild-bothersome CP (MBCP). We found that pain catastrophizing was associated with increased odds of HICP, and self-efficacy and chronic pain acceptance were associated with lower odds of HICP. Among participants with evaluations at both T1 and T2 (n = 63), ∼56% were in the longitudinal high-risk group (had HICP at both time points or transitioned to HICP at T2), and the remainder were in the longitudinal low-risk group (transitioned to MBCP or no CP at T2 or had MBCP at both timepoints). Pain catastrophizing at T1 was associated with higher odds of being in the longitudinal high-risk group. Findings from SPiRIt suggest that persons with SCD and HICP experience greater morbidity and worse outcomes, that psychological factors may be associated with HICP, and that HICP may be dynamic “state” in SCD. These findings support further longitudinal study to identify risk factors associated with sustained HICP and long-term poor outcomes.
