Among individuals with sickle cell disease (SCD), psychosocial and demographic variables appear to play a key role in the prediction of pain and related outcomes, according to a secondary analysis of data from the Global Research Network for Data and Discovery (GRNDaD) multicenter registry.

Results of the study were published in The Journal of Pain.

Although pain is the main symptomatic expression of SCD, the characteristics that affect pain experiences and outcomes in patients with the disease remain to be elucidated. The researchers sought to use multivariable modeling to explore the “associations of biopsychosocial variables with a disease-specific measure of pain interference known as pain impact.”

In patients with SCD, pain is the hallmark of the disorder and is linked to poor quality of life, premature mortality, and excessively high healthcare costs. In children with the condition, episodes of recurrent acute pain vaso-occlusive episodes (VOEs) are common; however, more than half of individuals with SCD experience chronic/persistent pain in late adolescence and young adulthood. Both acute and chronic SCD-associated pain poses many unique challenges for healthcare providers.

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At the time of the current study, 15 SCD centers had contributed data to the GRNDaD registry. A total of 657 individuals from 10 SDC centers completed the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) pain subscales, which evaluate the impact of pain on patients. Further, 403 participants completed the Brief Pain Inventory Short Form (BPI) measure of pain intensity and 267 individuals completed the Patient-Reported Outcomes Measurement Information System Physical Function Short Form 8b (PROMIS) physical function questionnaire. Overall, 203 individuals completed all 3 questionnaires.

The study sample of 657 participants was 60% female. The median patient age was 34 years (range, 26-42 years). At the time of enrollment in the GRNDaD registry, chronic pain was reported in 64% of the study sample. Overall, 44% of the participants reported an annual income of less than $12,020. In fact, the majority of patients reported an annual income of less than $41,320.

Results of the study revealed that for pain impact, overall, the multivariable regression model accounted for 58% of the variance. Based on an analysis of the relative significant contribution of each variable to pain impact, the following variables had the strongest association with pain impact:

  • Social functioning: P <.001
  • Emotional functioning: P <.001
  • Income: P <.001
  • Age: P =.004
  • Number of SCD episodes: P =.007

Better emotional and social functioning was associated with a lower pain impact. Increasing age was linked to worse pain impact, with changes most pronounced during late adolescence and young adulthood (20 years of age to early 30s). Low social functioning also was strongly associated with lower physical functioning and higher pain severity.

“Overall, the results suggest that social and emotional functioning are more strongly associated with pain impact in individuals with SCD than previously studied modifiers such as SCD genotype, hemoglobin, and percentage fetal hemoglobin,” the researchers noted. “Future research using longitudinally collected data is needed to confirm these findings,” they concluded.


Kenney MO, Wilson S, Shah N, et al. Biopsychosocial factors associated with pain and pain-related outcomes in adults and children with sickle cell disease: a multivariable analysis of the GRNDaD multi-center registryJ Pain. Published online August 4, 2023. doi:10/1016/j.jpain.2023.07.029