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Abstract
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).
To examine the prevalence of self-reported pain and the relationship among pain, crises,
and utilization in adults with sickle cell disease.
Prospective cohort study.
Academic and community practices in Virginia.
232 patients age 16 years or older with sickle cell disease.
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.
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.
The study was done in a single state. Patients did not always send in their diaries.
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.