Daily Assessment of Pain in Adults with Sickle Cell Disease

15 January 2008 | Volume 148 Issue 2 | Pages 94-101

Background: Researchers 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).

Objective: To examine the prevalence of self-reported pain and the relationship among pain, crises, and utilization in adults with sickle cell disease.

Design: Prospective cohort study.

Setting: Academic and community practices in Virginia.

Patients: 232 patients age 16 years or older with sickle cell disease.

Measurements: Patients 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.

Results: Pain (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.

Limitations: The study was done in a single state. Patients did not always send in their diaries.

Conclusion: Pain 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.

Editors' Notes Context Although outpatient, emergency department, and hospital visits have been used as indicators of sickle cell disease severity, the relationship between health care use and pain episodes has not been well described. Contribution Two hundred thirty-two patients with sickle cell disease completed a daily diary for 6 months, providing 31 017 patient-days for analysis. Patients reported pain on 56% of total patient-days, crises on 13%, and health care utilization on 4%. Implication Patients with sickle cell disease frequently have pain but usually manage even severe pain without an outpatient, emergency department, or hospital visit. —The Editors

 

Author and Article Information

From Virginia Commonwealth University, Richmond, and University of Virginia, Charlottesville, Virginia.

Grant Support: By the National Heart, Lung, and Blood Institute (1R01HL64122-01A1).

Potential Financial Conflicts of Interest: Consultancies: W.R. Smith (Purdue Pharma). Grants received: W.R. Smith (National Heart, Lung, and Blood Institute), L.T. Penberthy (National Heart, Lung, and Blood Institute), D.K. McClish (National Heart, Lung, and Blood Institute), I.P. Aisiku (National Heart, Lung, and Blood Institute), S.D. Roseff (National Heart, Lung, and Blood Institute). Grants pending: W.R. Smith (National Heart, Lung, and Blood Institute), L.T. Penberthy (National Heart, Lung, and Blood Institute).

Requests for Single Reprints: Wally R. Smith, MD, Division of Quality Health Care, Department of Internal Medicine, Virginia Commonwealth University, Box 980306, Richmond, VA 23298; e-mail, wrsmith{at}vcu.edu.

Current Author Addresses: Drs. Smith and Penberthy and Mr. Dahman: Virginia Commonwealth University, 1200 East Broad Street, Room W10W-402, Richmond, VA 23298.

Dr. Bovbjerg: University of Virginia, Box 800717, Charlottesville, VA 22908.

Dr. McClish: Virginia Commonwealth University, 1101 East Marshall Street, Richmond, VA 23298.

Dr. Roberts: Virginia Commonwealth University, 401 College Street, Richmond, VA 23298.

Dr. Aisiku: Virginia Commonwealth University, 401 North 12th Street, Richmond, VA 23298.

Dr. Levenson: Virginia Commonwealth University, Box 980268, Richmond, VA 23298.

Dr. Roseff: Virginia Commonwealth University School of Medicine, 1200 East Marshall Street, Richmond, VA 23298.

Author Contributions: Conception and design: W.R. Smith, L.T. Penberthy, V.E. Bovbjerg, D.K. McClish, J.D. Roberts, B. Dahman, J.L. Levenson.

Analysis and interpretation of the data: W.R. Smith, L.T. Penberthy, V.E. Bovbjerg, D.K. McClish, J.D. Roberts, I. Aisiku, B. Dahman, J.L. Levenson, S.D. Roseff.

Drafting of the article: W.R. Smith, L.T. Penberthy, V.E. Bovbjerg, D.K. McClish, B. Dahman, J.L. Levenson.

Critical revision of the article for important intellectual content: W.R. Smith, L.T. Penberthy, V.E. Bovbjerg, D.K. McClish, I. Aisiku, B. Dahman, J.L. Levenson, S.D. Roseff.

Final approval of the article: W.R. Smith, L.T. Penberthy, V.E.

Provision of study materials or patients: W.R. Smith, J.D. Roberts.

Statistical expertise: D.K. McClish, B. Dahman.

Obtaining of funding: W.R. Smith, D.K. McClish, J.D. Roberts.

Administrative, technical, or logistic support: S.D. Roseff.

Collection and assembly of data: W.R. Smith, B. Dahman.