The Complexity of Pain Management in Patients With Sickle Cell Disease

A shared decision-making approach may be beneficial for patients with sickle cell disease when determining pain management regimens.

The decision to use opioids in individuals with sickle cell disease (SCD) involves a complex process that considers situation, values, risk for adverse events, and the developmental stage of the patient, according to a qualitative assessment published in Journal of Pain.

Patients with SCD and their caregivers were identified for the study at the Medical University of South Carolina in 2019. In order to meet inclusion criteria, individuals had to receive opioids for pain management and have at least 3 pain episodes in the previous year. Interviews were conducted independently if the individual was aged 18 years and older; with caregivers if the patients was aged 12 to 17 years; or with the caregiver alone if they were aged less than 12 years.

The adult patients had a median age of 21 (range, 18-25) years, 70% were women, and they had a median of 2 (range, 0-6.5) hospitalizations for pain in the previous year. For the child and caregiver dyads, the patients had a median age of 10 (range, 5-18) years and their caregivers 38 (range, 29-50) years; 60% of the patients were female and they had 3 (range, 0-10) past-year hospitalizations for pain.

The most common opioids reported were oxycodone and morphine.

Future shared decision-making interventions should incorporate factors most relevant and important to individuals with SCD and their caregivers.

Findings indicated that patients encounter a complex decision-making process about whether to use opioids or nonopioid alternatives, which encompassed outcomes and consequences; personal values and psychological and developmental state; and patient-clinician interactions, stressors, and support.

The decision to use opioids were often balanced with potential side effects such as drowsiness, nausea, change in mood, loss of appetite, or constipation. The common nonopioid analgesic alternatives that patients endorsed were a mixture of home- and clinic-based remedies, including heating pads, hydration, Epsom salts, marijuana, lidocaine pads, or emergency department care. In a subset of interviews, some patients and caregivers stated that managing multiple medications and opioids was challenging.

Patients also considered the type of pain they were having, their past experience with particular medications, and how their functioning changed while using medications. The decisions varied between children and adult patients. Many patients noted that they prioritized functioning in school and work and considered safety and social perceptions.

Limitations of this study included the small sample size, the absence of older adult representation, and a lack of generalizability as the study was conducted at a single site. In addition, the study did not account for provider perspectives.

“Decision-making was complex, with multiple factors considered in the decision problem, context, and patient domains. Future shared decision-making interventions should incorporate factors most relevant and important to individuals with SCD and their caregivers,” the study authors concluded.


Phillips S, Schlenz AM, D’Alton S, Johnson M, Kanter J. Patient and family opioid decision-making for pain management in sickle cell disease: a qualitative study. J Pain. Published online February 28, 2023. doi:10.1016/j.jpain.2023.02.022