SUMMARIES FOR PATIENTS
Pain and Health Care Visits in Patients with Sickle Cell Disease
15 January 2008 | Volume 148 Issue 2 | Page I-36
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The summary below is from the full report titled "Daily Assessment of Pain in Adults with Sickle Cell Disease." It is in the 15 January 2008 issue of Annals of Internal Medicine (volume 148, pages 94-101). The authors are W.R. Smith, L.T. Penberthy, V.E. Bovbjerg, D.K. McClish, J.D. Roberts, B. Dahman, I.P. Aisiku, J.L. Levenson, and S.D. Roseff.
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What is the problem and what is known about it so far?
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Sickle cell disease (also known as sickle cell anemia) is hereditary anemia that occurs because of an abnormality in hemoglobin. Hemoglobin is the substance in red blood cells that carries oxygen. Because of the abnormal hemoglobin, red blood cells become sickle-shaped instead of round and carry too little oxygen. When these sickled red blood cells clump together inside small blood vessels, they block blood supply to body tissues. This causes severe pain, as well as short-term or long-term damage, in almost any affected body part. Cells also get torn apart, causing severe anemia (low red blood cell count). Infection, stress, exercise, dehydration, high altitude, temperature changes, or anesthesia can trigger blood cells to sickle and lead to a painful "crisis."
Traditionally, doctor's offices, emergency departments, and hospitals seeing patients in a crisis have thought of it as pain so bad that taking pain medications at home was not enough. They have assumed from previous research that pain managed by patients at home occurred infrequently and was not severe.
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Why did the researchers do this particular study?
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To find out about daily experiences with pain in patients with sickle cell disease, to see how often patients called pain a crisis, and to see how often pain resulted in the patient visiting the doctor's office, emergency department, or hospital.
232 patients with sickle cell disease who were at least 16 years old. All of the patients received care from either community-based doctors or sickle cell specialists at Virginia Commonwealth University or Eastern Virginia Medical School.
The researchers asked patients to write the following information in a diary every day for 6 months: Their worst sickle cell pain in the past 24 hours, on a scale of 0 (none) to 9 (unbearable), and whether they thought they were in a crisis; had taken medication for the pain; or went to a doctor's office, emergency department, or hospital because of the pain during that time.
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What did the researchers find?
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More than a quarter of the patients experienced sickle cell pain on 95 out of every 100 days. In general, sickle cell pain was much more frequent and severe than doctors have previously reported. However, patients only sometimes called their pain a crisis, and most managed their pain at home, even if they thought they were in a crisis.
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What were the limitations of the study?
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The study did not examine what leads to sickle cell pain being so frequent and intense. Understanding this could help doctors and patients better manage the pain.
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What are the implications of the study?
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Patients with sickle cell disease have pain more frequently than previously estimated and do not seek health care on most days that they have pain.