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.
Objectives Pain is the hallmark symptom of sickle cell disease (SCD), yet the types of pain that these patients experience, and the underlying mechanisms, have not been well characterized. The study purpose was to determine the safety and utility of a mechanical and thermal quantitative sensory testing (QST) protocol and the feasibility of utilizing neuropathic pain questionnaires among adults with SCD. Methods A convenience sample (N=25, 18 women, mean age 38.5 ± 12.5 [20–58 years]) completed self-report pain and quality-of-life tools. Subjects also underwent testing with the TSA-II NeuroSensory Analyzer and calibrated von Frey microfilaments. Results We found that the QST protocol was safe and did not stimulate a SCD pain crisis. There was evidence of central sensitization (n=15), peripheral sensitization (n=1), a mix of central and peripheral sensitization (n=8), or no sensitization (n=1). The neuropathic pain self-report tools were feasible with evidence of construct validity; 40% of the subjects reported S-LANSS scores that were indicative of neuropathic pain and had evidence of central, peripheral or mixed sensitization. Discussion The QST protocol can be safely conducted in adults with SCD and provides evidence of central or peripheral sensitization, which is consistent with a neuropathic component to SCD pain. These findings are novel, warrant a larger confirmatory study, and indicate the need for normative QST data from African American adults and older adults.
PAINReportIt,® a computerized version of Melzack’s (© 1970) McGill Pain Questionnaire, presents pain measurement items to responders in serial display screens accompanied by pop-up screens. In this study, we used cognitive interviews to examine further validity of PAINReportIt® with 25 African Americans with sickle cell disease. The specific aims were to determine if the questions in the PAINReportIt® program were relevant to and understood by African Americans with SCD and to describe the nature of the pain they experienced. Most study participants were enthusiastic and able to use the tool as intended, appreciated the comprehensiveness, detail, and multidimensionality of its pain data. For some screens, two to six participants’ responses suggested some question understanding and interpretation issues, inability to retrieve the requested information, or technical issues. Their responses indicated that screens lacked sufficient specificity for the temporal nature of pain recurrent over a lifetime. The program captured both nociceptive and neuropathic aspects of sickle cell pain, and provided detailed information on the location, intensity, quality and pattern of pain experienced by participants. We recommend that future revisions to the PAINReportIt® program address the temporal issues of measuring recurrent pain, resolve technological issues related to pop-ups, and simplify difficult words to better match the typical health literacy levels of patients. These revisions could further enhance the technological aspects, usability, and cultural appropriateness of the tool for African Americans with SCD.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.