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-pharmacological 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 Supports; Information; Patient-Provider Interactions), and the Patient (Decision-Making Approaches; Developmental Status; Personal and Life Values; Psychological State). Key findings indicated opioid 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 determining shared decision-making approaches around pain management between providers and patients, in accordance with recent SCD pain management guidelines.