Assessing current non-pharmacologic pain management practices for sickle cell disease in adults

Both acute and chronic pain caused by sickle cell disease (SCD) is often managed with opioid therapy despite limited evidence for long-term efficacy. Adequately managing SCD pain requires a comprehensive approach, incorporating both pharmacologic and non-pharmacologic interventions. In other conditions, peer-mentored group programs are effective in managing chronic pain; however, their role in SCD is not yet described. Our objective is to understand patients' current pharmacologic and non-pharmacologic SCD management practices as well as further exploring perspectives of pain related to SCD.

Participants were interviewed using semi-structured format. Audio-recorded interviews were transcribed. Descriptive statistics and pain management modality frequencies were analyzed with Microsoft Excel. Qualitative analyses, utilizing NVIVO, identified themes through thematic analysis.

Thirty-four interviews were conducted. One interview was excluded due to incomplete audio-recording. Participants described a range of coping skills including both pharmacological and non-pharmacologic pain management techniques. 81.8% (23/28) identified a relationship between stress and pain. Most patients were interested in a group intervention for pain related to SCD; 60.9% (17/28) preferred peer moderators to co-lead the intervention with medical professionals. 85.7% (24/28) preferred a fully in-person or a hybrid intervention. Pain descriptions included severe bone pain, sharp and shooting pain, and throbbing and aching body wide pain.

Patients with SCD already use many non-pharmacologic methods for pain relief and endorse a desire to learn about and engage in additional techniques. There is considerable interest among patients in participating in group interventions for chronic pain related to SCD, especially if they are facilitated by peers. Future research should focus on the efficacy and benefit of various non-pharmacologic techniques for pain management in SCD.