Clinical Pain Screening Proves Feasible in Pediatric Sickle Cell Disease

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Over the study period, pain screening procedures were integrated within routine clinical visits and providers’ workflow in sickle cell disease care.

A recent quality improvement study identified its implemented comprehensive pain screening processes as feasible for a pediatric patient population undergoing sickle cell disease (SCD) care.1

Using routine outpatient visits, patients aged 8 to 18 completed pain frequency, duration, and chronic pain risk measures using the pediatric Pain Screening Tool (PPST). After coordinating responsibilities between a medical student and clinical staff, the investigative team were able to integrate the screening process into routine clinical workflow.

“The pain screening processes implemented within this study were feasible within a pediatric SCD clinic and yielded valuable insights regarding clinical pain presentations among youth with SCD,” wrote the investigative team led by Samuel N. Rodgers-Melnick, MPH, University Hospitals Connor Whole Health.

As children with SCD age into adolescence, the frequency, duration, and severity of disease-related pain are heightened.2 Diagnostic criteria have defined chronic pain in SCD as present on most days (≥15 days per month) over the past 6 months, display ≥1 clinical sign of pain, and exhibit no other diagnosis that better explains signs and symptoms.

Without appropriate screening or interventions in childhood, including disease-modifying therapy or integrative health and medicine (IHM) modality, pain-related challenges may persist into adulthood.

Regardless of the prevalence of chronic pain among youth with SCD, few trials have implemented screening protocols to identify chronic pain and any related psychosocial challenges in clinical practice.3 In this analysis, Ogawa and colleagues aimed to clarify the feasibility of routine pain screening, identify clinical pain presentations, and determine preferences and resources related to IHM modality engagement in a pediatric SCD clinic.1

Between March 2022 and May 2023, all patients with SCD aged 8–18 years receiving care at the University Hospitals Rainbow Babies & Children’s Hospital (UHRBC) SCD clinic were eligible for pain screening. Those matching eligibility criteria were added to a Research Electronic Data Capture (RedCap) database.

The study’s PASSKEY REDCap database allowed study instruments to be autoscored, based on pain classification in the Pediatric Pain Screening Tool (PPST) total score. According to assessments, patients were categorized as having asymptomatic (0 pain days), episodic (1–14 pain days), persistent (≥15 pain days with frequency <6 months), or chronic (≥15 pain days with frequency ≥6 months) pain.

Altogether, the 9-item PPST questionnaire yields a total score (0–9) with physical and psychosocial subscales to classify patients with low (PPST total score <3), medium (PPST total score ≥3), psychosocial score (<2), or high risk (PPST total score ≥3, psychosocial score ≥2) for persistent symptoms and disability. Those screening for persistent or chronic pain, as well as medium or high risk for persistent symptoms and disability, were asked to complete measures of pain interference, pain catastrophizing, and interest in/resources for engaging in IHM modalities.

Among 141 eligible patients who attended ≥1 appointment at the study clinic, 104 (73.8%) completed an initial PASSKEY screening. Patients had a mean age of 12.46 years and were mostly female (53.8%), Black (99.0%), and non-Hispanic (99.0%). Of the population, 22 reported episodic pain, 34 (32.7%) reported persistent or chronic pain, and 48 patients (46.2%) reported medium or high risk for persistent symptoms and disability.

Further data revealed a total of 59 (56.7%) patients completed the PROMIS Pain Interference (PROMIS) measure (50 = normal) and reported a mean pain interference T-score of 53.2 ± 8.8. Moreover, 56 of these patients completed the Pain Catastrophizing Scale-Child (PCS-C) questionnaire (0–52) and reported a mean pain catastrophizing total score of 24.3 ± 10.2.

The IHM survey responses revealed the most common modalities patients prefer for pain management included music therapy (55.6%), art therapy (51.9%), and massage therapy (38.9%). Patients indicated their preference to meet in person (81.5%) to access pain management programs over virtual programming (22.2%).

Due to moderate-to-high pain catastrophizing scores reported in the study, Ogawa and colleagues noted the importance of pain catastrophizing in the prediction of future pain outcomes. The team suggested the importance of championing interventions to address this specific outcome.

“While cognitive behavioral therapy and mindfulness techniques have been utilized to reduce levels of pain catastrophizing, more studies are needed to examine the impact of nonpharmacologic and IHM modalities on this outcome among youth with SCD,” investigators wrote.


  1. Vroom DC, Rodgers-Melnick SN, Brown T, Owusu-Ansah A, Dusek JA. Pain screening in youth with sickle cell disease: A quality improvement study. Pediatr Blood Cancer. Published online February 13, 2024. doi:10.1002/pbc.30912
  2. Sil S, Cohen LL, Dampier C. Pediatric pain screening identifies youth at risk of chronic pain in sickle cell disease. Pediatr Blood Cancer. 2019;66(3):e27538. doi:10.1002/pbc.27538
    Sil S, Cohen LL, Bakshi N, et al. Changes in Pain and Psychosocial
  3. Functioning and Transition to Chronic Pain in Pediatric Sickle Cell Disease: A Cohort Follow-up Study. Clin J Pain. 2020;36(6):463-471. doi:10.1097/AJP.0000000000000827