Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study

Pain is a significant symptom experienced frequently by individuals with sickle cell disease (SCD). Pain management includes strategies such as oral rehydration, non-pharmacologi-cal therapies (eg, massage, relaxation), and oral analgesics and opioids. Shared decision-making around pain management is emphasized repeatedly in recent guidelines; however, research is sparse regarding factors to be considered in shared decision-making approaches including the perceived risks and benefits of opioids. This qualitative descriptive study was conducted to explore perspectives of decision-making for opioid medications in SCD. We conducted 20 in-depth interviews with caregivers of children with SCD and individuals with SCD to elucidate the decision-making processes around home use of opioid therapy for pain management at a single center. Themes were identified in the domains of the Decision Problem (Alternatives and Choices; Outcomes and Consequences; Complexity), the Context (Multilevel Stressors and Sup-ports; Information; Patient-Provider Interactions), and the Patient (Decision-Making Approaches; Developmental Status; Personal and Life Values; Psychological State). Key findings indicated opi-oid management for pain in SCD is important yet complex and requires collaboration among patients, families, and providers. Elements of patient and caregiver decision-making identified in this study may be applied to shared decision-making strategies in the clinical setting and future study.Perspective: This study illustrates the factors involved in decision-making around home opioid use for pain management in children and young adults with SCD. These findings can be applied to deter-mining shared decision-making approaches around pain management between providers and patients, in accordance with recent SCD pain management guidelines.& COPY; 2023 by United States Association for the Study of Pain, Inc.

Automated summary

This qualitative study explored the decision-making processes for opioid medications in individuals with sickle cell disease (SCD). The findings highlight the importance of collaboration among patients, families, and providers in managing pain with opioids. These results can inform shared decision-making strategies and future research.