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

Abstract

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 hr on a 0-10 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 one 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 are 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.

Non-Conventional Pain Management for Sickle Cell Disease

“…Amanda, et al found that almost 40% of SCD study population had evidence of neuropathic pain [19]. Although the underlying pathobiology of SCD pain is not well known [24,25]. Neuropathic pain is shown to be associated with higher pain intensity and longer duration, it is harder to treat, and is more refractory to conventional analgesics [26].…”

IL1A rs1800587 Associates with Chronic Noncrisis Pain in Sickle Cell Disease

“…A computerized multidimensional pain assessment tool, PAINReportIt ® [2,26,27] (Nursing Consult, LLC, WA, USA), was used for pain phenotyping. Subjects completed baseline pain location, intensity, quality and pattern during a routine clinic visit (i.e., not during pain crisis or other urgent care visits to the clinic).…”

“…Pain is prevalent and severe in patients with sickle cell disease (SCD), an inherited hematological disorder caused by substitution of a valine residue for glutamic acid in the 6th codon of the β-globin gene [1][2][3]. Although the genetic basis of the disease is well defined, the pathogenesis and heterogeneity of pain in SCD remains poorly understood.…”

“…Episodes of vaso-occlusive crisis, which play an important role in SCD pathophysiology, result in severe acute crisis pain that is the most common reason for hospital admissions [4][5][6]. In addition to, and in absence of acute crisis pain, nearly half of SCD patients experience chronic pain that is refractory to currently available medications, presenting a challenging clinical problem [2,6,7]. Moreover, both acute and chronic pain are highly heterogeneous [1,2,4,7,8].…”

“…In addition to, and in absence of acute crisis pain, nearly half of SCD patients experience chronic pain that is refractory to currently available medications, presenting a challenging clinical problem [2,6,7]. Moreover, both acute and chronic pain are highly heterogeneous [1,2,4,7,8].…”