Patient-Reported Outcomes: Descriptors of Nociceptive and Neuropathic Pain and Barriers to Effective Pain Management in Adult Outpatients with Sickle Cell Disease

Despite frequent episodes of severe recurrent pain in sickle cell disease (SCD), sensory pain in outpatient adults with SCD lacks sufficient characterization. Furthermore, pivotal barriers may interfere with these patients' adherence to prescribed analgesic therapies but have not been studied systematically. We describe sensory pain characteristics, barriers, and analgesic use reported by adults with SCD during routine clinic visits. Patients (N = 145; 67% female, 94% African American) completed measures on a pen-tablet computer. Patients reported an average of 3.6 ± 2.3 pain sites; mean current pain intensity (3.3 ± 3.2), least (3.0 ± 2.7) and worst (4.9 ± 3.5) pain intensity in 24 hours on a 0 to 10 scale, multiple neuropathic (4.5 ± 3.4, 8.3% selected none) and nociceptive (6.8±4.0) pain descriptors, and continuous pain pattern (59%). Their mean pain barriers score was 2.2 ± 0.9, and 33% were dissatisfied with their pain levels. Only 14% reported taking at least 1 adjuvant drug, 82% were taking nonopioids, 85% step 2 opioids, and 65% step 3 opioids. Patients reported using, on average, 4.9 ± 2.7 analgesics. Their pain barriers scores were similar to or greater than people with cancer. Importantly, their pain may be both nociceptive and neuropathic, contrary to common expectations that SCD pain is only nociceptive. Few patients, however, took drugs effective for neuropathic pain.