Daily assessment of pain in adults with sickle cell disease.
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.


METHODS
Prospective cohort study.


METHODS
Academic and community practices in Virginia.


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


METHODS
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.


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


CONCLUSIONS
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.
Smith
Wally R
WR
Division of Quality Health Care, Department of Internal Medicine, Virginia Commonwealth University, Richmond, Virginia 23298, USA. wrsmith@vcu.edu
Penberthy
Lynne T
LT
Bovbjerg
Viktor E
VE
McClish
Donna K
DK
Roberts
John D
JD
Dahman
Bassam
B
Aisiku
Imoigele P
IP
Levenson
James L
JL
Roseff
Susan D
SD
D000293:Adolescent; D000328:Adult; D000553:Ambulatory Care / Q000706:statistics & numerical data*; D000701:Analgesics, Opioid / Q000627:therapeutic use; D000755:Anemia, Sickle Cell / Q000503:physiopathology*; D004636:Emergency Service, Hospital / Q000706:statistics & numerical data*; D006760:Hospitalization; D006801:Humans; D010146:Pain / Q000188:drug therapy / Q000209:etiology*; D010147:Pain Measurement
D000701:Analgesics, Opioid