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Updated: Apr 23, 2026

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A prospective study of high-impact chronic pain in sickle cell disease: the Sickle Pain-Related Impact (SPiRIt) study
Ashna Jagtiani1,2, Ashleigh Hawk1,2, Cynthia Sinha1,2
1Division of Pediatric Hematology-Oncology-BMT, Emory University School of Medicine, Atlanta, GA, United States.
Insights
High-impact chronic pain (HICP) in sickle cell disease (SCD) leads to worse outcomes. Psychological factors like pain catastrophizing are linked to HICP, while self-efficacy and acceptance may reduce its risk.
Area of Science:
- Sickle Cell Disease Research
- Chronic Pain Management
- Psychological Impact of Pain
Background:
- High-impact chronic pain (HICP) significantly restricts daily activities in sickle cell disease (SCD), but its risk factors and outcomes are poorly understood.
- The Sickle Pain-Related Impact (SPiRIt) study addresses this knowledge gap by prospectively examining HICP in young adults with SCD.
Purpose of the Study:
- To investigate the characteristics and risk factors associated with high-impact chronic pain (HICP) in individuals with sickle cell disease (SCD).
- To compare outcomes between patients with HICP and mild-bothersome chronic pain (MBCP) in SCD.
- To explore the longitudinal course of HICP in SCD.
Main Methods:
- Prospective longitudinal study (SPiRIt) of 90 individuals with SCD (aged 16-40) reporting pain at baseline (T1) and 70 at 6 months (T2).
- Assessment of pain burden, functional outcomes, pain catastrophizing, fear of movement, self-efficacy, and chronic pain acceptance.
- Categorization into high-impact chronic pain (HICP) and mild-bothersome chronic pain (MBCP) groups.
Main Results:
- Participants with HICP reported greater pain, worse outcomes, higher pain catastrophizing, fear of movement, and lower self-efficacy and pain acceptance compared to MBCP.
- Pain catastrophizing was associated with increased odds of HICP, while self-efficacy and pain acceptance were associated with decreased odds.
- Approximately 56% of participants with T1 and T2 data were in a longitudinal high-risk group, with pain catastrophizing at T1 predicting higher odds of being in this group.
Conclusions:
- Individuals with SCD experiencing HICP face significant morbidity and poorer outcomes.
- Psychological factors, including pain catastrophizing, self-efficacy, and pain acceptance, play a crucial role in the development and persistence of HICP in SCD.
- HICP in SCD may be a dynamic state, necessitating further longitudinal research to identify risk factors for sustained HICP and long-term adverse outcomes.
Abstract:
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.
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