Satisfied or not satisfied: pain experiences of patients with sickle cell disease

Abstract

Aims To examine the relationship between pain and satisfaction in patients with sickle cell disease. Background Frequency and severity of unrelieved sickle cell pain are positively associated with mortality. Yet, information is scarce on whether sickle cell patients are satisfied with their pain level. Design A cross-sectional, correlational analysis of baseline data from a randomized clinical trial. Methods A randomized sample of adult outpatients was recruited between February 2007 - March 2011. Patients completed the PAINReportIt®, containing measures of pain, satisfaction and socio-demographics. We analyzed data using Kendall rank correlations, analysis of variance, Tukey-Kramer post hoc tests, Fisher’s tests and proportional odds logistic regression. Results There were significant correlations between pain outcomes (average pain intensity and composite pain index) and satisfaction with pain level, but average pain intensity more strongly discriminated groups based on satisfaction with pain level. Among pain variables bivariately associated with patient satisfaction with pain level (optimal pain goal, time with tolerable pain and pain expectation), only pain expectation maintained its significant relationship to satisfaction with pain level when average pain intensity was controlled. A smaller percentage of our sickle cell patients reported moderate to severe pain intensity (28%) or high composite pain index (39%) while reporting being satisfied with pain their level than reported in earlier studies using different measures and populations (70–94%). Conclusion Satisfaction with pain level was an unambiguous measure of patient satisfaction and a promising indicator of pain that did not show the paradoxical relationship between satisfaction and pain seen with past measures.

A QST‐based Pain Phenotype in Adults With Sickle Cell Disease: Sensitivity and Specificity of Quality Descriptors

“…In particular, QST results in African Americans with SCD reveal the presence of an abnormal thermal pain threshold (sensitivity) and/or a reduced mechanical pain threshold (sensitivity) . Specifically they report lower heat pain thresholds than the published norms and higher cold pain thresholds . There also are significant differences in heat pain tolerance between SCD and healthy control participants .…”

“…As recently redefined, neuropathic pain is the response to nerve injury caused by a lesion or disease of the central nervous system (CNS), the peripheral somatosensory nervous system (PNS), or both the CNS and PNS . The hallmark symptom of SCD is pain that can be persistent and so severe that many patients require hospitalization to manage it at an annual cost of over $2 billion . In the recent past, the pain of SCD was not considered to arise from a neuropathic mechanism .…”

“…In the recent past, the pain of SCD was not considered to arise from a neuropathic mechanism . The pain of SCD, however, is complex and may vary by an underlying etiology that involves some dysfunction of the nervous system such as peripheral and central sensitization . Studies have revealed altered peripheral nerve architecture in animal models of SCD and evidence of sensitization in humans with SCD .…”

“…QST and self‐report questionnaires are useful to characterize the sensitization and neuropathic pain experiences of patients with SCD . In particular, QST results in African Americans with SCD reveal the presence of an abnormal thermal pain threshold (sensitivity) and/or a reduced mechanical pain threshold (sensitivity) . Specifically they report lower heat pain thresholds than the published norms and higher cold pain thresholds .…”

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…This leads to acute tissue ischemia, acute pain in the peripheries, bones, joints, abdomen, and lungs, as well as long term tissue and organ damage. Ezenwa et al (2015) found that there is a relationship between the expectation of pain and selfreported satisfaction with the level of pain experienced by individuals with sickle cell disease. The authors concluded that measurement of the level of satisfaction of a patient with pain associated with sickle cell disease can assist with evaluation and the provision of adequate treatment (Ezenwa et al, 2015).…”