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.

Pain
|April 22, 2026
PubMed

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.