By Charles Bankhead, Staff Writer, MedPage Today
RICHMOND, Va., Jan. 14 -- Patients with sickle cell disease endure pain that is more frequent and more severe than commonly appreciated by clinicians, investigators here found.
In a study of 232 patients ages 16 and older, recruited throughout Virginia, more than half the patients reported having pain more than half the time, Wally R. Smith, M.D., of Virginia Commonwealth University, and colleagues reported in the Jan. 15 issue of Annals of Internal Medicine.
Almost 30% of the patients said they were in pain virtually every day, the survey found.
Yet most pain days did not correlate with sickle cell crises or health care utilization, a traditional proxy for pain and underlying vascular occlusion.
"Our findings suggest a vast, mostly submerged iceberg of sickle cell
pain that is not seen by most professionals, but rather is managed
outside of medical facilities," the authors stated. "The extremely
low proportion of sickle cell disease pain that is managed within
medical facilities explains why treating physicians might believe
that sickle cell pain is the exception rather than the rule."
Patients with sickle cell disease may have severe and disabling pain
that typically occurs in the long bones, joints, back, abdomen, and
chest, the authors said. Vaso-occlusive pain accounts for most
medical contacts with sickle cell patients. The frequently episodic
nature of contacts may lead to the conclusion that patients do not
have pain on most days.
Caregivers traditionally have used the term "crisis" to describe
sickle cell patients' medical contacts and have used the term chronic
pain syndrome to describe pain associated with sickle cell disease
complications, such as ankle ulcers or avascular necrosis. However,
the relationship among sickle disease pain, crises, and health care
utilization had not been examined in a large-scale longitudinal
epidemiologic study, according to the authors.
In the Pain in Sickle Cell Epidemiology Study (PiSCES), patients
completed daily diaries for as long as six months, recording maximum
pain (on a scale of 0-9), crises, and use of hospital, emergency, or
unscheduled ambulatory care for pain.
Overall, 54.5% of patients reported pain on more than half (³51%) of 31,017 patient-days. On 38.3% of days, patients described their pain as being at less than crisis level and not requiring unplanned health care utilization. They reported crisis-level pain on 12.7% of days, but managed the pain at home. The patients reported unplanned health care utilization on 3.5% of days. Inclusion of scheduled visits increased utilization to only 5.1% of days.
The investigators found that 29.3% of participants reported having pain on more than 95% of diary days, whereas 14.2% reported pain on no more than 5% of diary days.
Home opiate use independently predicted pain, crises, and utilization. Mean pain intensity increased with the percentage of pain days (P<0.001). Pain intensity was significantly higher on health care utilization days (P<0.001) but did not predict crisis episodes.
"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," the authors concluded. "It is mostly managed at home; therefore, its prevalence is probably underestimated by health care providers, resulting in misclassification, distorted communication, and undertreatment."