• Wally R Smith, Lynne T Penberthy, Viktor E Bovbjerg, Donna K McClish, John D Roberts, Bassam Dahman, Imoigele P Aisiku, James L Levenson, and Susan D Roseff.
• Division of Quality Health Care, Department of Internal Medicine, Virginia Commonwealth University, Richmond, Virginia 23298, USA. wrsmith@vcu.edu
• Ann. Intern. Med. 2008 Jan 15;148(2):94-101.

BackgroundResearchers of sickle cell disease have traditionally used health care utilization as a proxy for pain and underlying vaso-occlusion. However, utilization may not completely reflect the amount of self-reported pain or acute, painful episodes (crises).ObjectiveTo examine the prevalence of self-reported pain and the relationship among pain, crises, and utilization in adults with sickle cell disease.DesignProspective cohort study.SettingAcademic and community practices in Virginia.Patients232 patients age 16 years or older with sickle cell disease.MeasurementsPatients completed a daily diary for up to 6 months, recording their maximum pain (on a scale of 0 to 9); whether they were in a crisis (crisis day); and whether they used hospital, emergency, or unscheduled ambulatory care for pain on the previous day (utilization day). Summary measures included both simple proportions and adjusted probabilities (for repeated measures within patients) of pain days, crisis days, and utilization days, as well as mean pain intensity.ResultsPain (with or without crisis or utilization of care) was reported on 54.5% of 31 017 analyzed patient-days (adjusted probability, 56%). Crises without utilization were reported on 12.7% of days and utilization on only 3.5% (unadjusted). In total, 29.3% of patients reported pain in greater than 95% of diary days, whereas only 14.2% reported pain in 5% or fewer diary days (adjusted). The frequency of home opiate use varied and independently predicted pain, crises, and utilization. Mean pain intensity on crisis days, noncrisis pain days, and total pain days increased as the percentage of pain days increased (P < 0.001). Intensity was significantly higher on utilization days (P < 0.001). However, utilization was not an independent predictor of crisis, after controlling for pain intensity.LimitationsThe study was done in a single state. Patients did not always send in their diaries.ConclusionPain in adults with sickle cell disease is the rule rather than the exception and is far more prevalent and severe than previous large-scale studies have portrayed. It is mostly managed at home; therefore, its prevalence is probably underestimated by health care providers, resulting in misclassification, distorted communication, and undertreatment.

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