Study: Sickle Cell Disease Pain Management Education Needs to be Streamlined

New research from the UK suggests educational tools for caregivers are in use and beneficial, but none are universally applied.

Healthcare professionals’ knowledge and attitudes around managing pain associated with a patient’s sickle cell disease could be improved through educational interventions including evidenced workshops and patient-led presentations, according to a new study.

A team of UK investigators recently reported that there are currently available educational resources that may improve a clinician’s capability and appreciation for treating pain in sickle cell patients—a group which is particularly impacted by the comorbid burden. That said, more research is necessary to define the most ideal educational interventions.

Investigators noted that “prompt medical intervention” necessary to treat life-threatening complications of sickle cell disease are often associated with varied and delayed approaches to pain assessment and management in patients. The end result is frequently longer hospital stays and misconception of disease-specific burdens.

“Reasons for variations and delays in pain management for sickle cell disease (SCD) patients have been widely researched, especially in the emergency department (ED),” they wrote. “Nurses, ED physicians and hematologists fear that patients are drug-seeking. Researchers and SCD patients report healthcare professionals show negative attitudes towards SCD patients and lack knowledge of SCD and pain management.”

The team, led by Anthonia Etonlogbo Oti, MSc, MPH, BSc, a theatre practitioner at Bolton NHS Foundation Trust, sought to analyze varying educational interventions directed toward managing pain among sickle cell disease patients in the UK—and whether any impacted the knowledge and attitude of healthcare professionals.

They conducted a rapid evidence assessment of research including education interventions about sickle cell disease or related symptom management featuring a target population of clinicians and caregivers. Oti and colleagues assessed a half-dozen databases for papers that were published in English before 2010, from March 2021 to January 2022.

The data quality was assessed via a Mixed Methods Assessment Tool (MMAT), and analyzed with a narrative approach.

Overall, they identified 10 eligible and relevant studies. Among the highlighted educational intervention methods included:

  • Slideshow presentations and group discussions around the Youth Acute Pain Functional Ability Questionnaire (YAPFAQ) tool
  • Virtual education courses
  • Caregiver-led workshops
  • Educational handout literature on sickle cell disease-associated pain
  • Patient testimonial-based videos
  • Experiential interventions
  • Multi-day educational conferences
  • Reiteration and education of guideline recommendations

Investigators observed improved outcomes for education recipients in each of 6 main themes: knowledge; attitude; perception; adoption; satisfaction; efficiency.

Half (n = 5) studies reported statistically significantly improved metrics in ≥1 outcome. Four studies reported a positive improvement in knowledge and attitude, and 2 reported no significant improvement of either.

“Due to the heterogeneity and uncertainties regarding the effects of the results, this study cannot make definite recommendations with certainty,” they wrote. “Sampson et al., also cautioned there is no “magic bullet intervention” that would be generalizable to different settings and rather recommend further robust RCT to evaluate stronger theoretical framework interventions with improved pain management for specific healthcare settings with reasons for success.”

That said, investigators concluded that 5 recommendations be considered on the basis of their findings:

  • Future sickle cell disease research should consider and deliberately define outcome measures including patient satisfaction and perspective on the impact of care.
  • Validated and standardized sickle cell disease pain assessment tools that could be replicated and compared need to be incorporated into healthcare practice.
  • Longitudinal studies must establish the sustainability of long-term impact with sickle cell disease interventions.
  • Sickle cell disease specialist nurses must be recruited and trained to provide continued training and multi-disciplinary support.
  • Sickle cell disease and pain management needs to be effectively integrated into the current teaching curriculum of both nursing and medical students.

“A careful consideration of teaching strategies that can incorporate SCD and pain management education into pre-registration programs, trust/preceptorship induction days, staff statutory training and nursing workflow should be considered,” they concluded. “Future studies are recommended to validate these suggestions.”

The study, “A rapid evidence assessment of sickle cell disease educational interventions,” was published online in Journal of Clinical Nursing.