Daily pain in adults with sickle cell disease—a different perspective

Abstract

Previous reports demonstrated that patients with sickle cell disease (SCD) experience pain on more than half of the observed days. Yet, these high incidences do not seem to match observations in our population. In this prospective cohort study, we aimed to assess the frequency and characteristics of daily, self-reported pain among adult SCD patients in the Netherlands. Consecutive patients were enrolled during routine outpatient visits and followed up to 6 months. A total of 55 patients completed 5,982 diary observation days. Median age was 27 years (IQR 23-43). Patients reported SCD related pain on 17% of the observed days; on 13% of these days this pain was not defined as a painful crisis, while 3% was reported as a painful crisis but managed at home, and on 1% of the observed days patients were admitted to the hospital. Analgesics were used on 52% of days with pain with a relatively infrequent use of oral opioids (9% of pain days). This first European study on pain in SCD indicates that pain appears to be significantly less frequent in our population as compared to previous study cohorts from the United States, and may be more representative for current SCD populations in other Western countries. Besides a more widespread use of hydroxycarbamide in modern disease management, differences in organization and accessibility of healthcare between countries may also explain this discrepancy.

Dynamics of von Willebrand factor reactivity in sickle cell disease during vaso‐occlusive crisis and steady state

“…Worldwide, > 300 000 infants with this disease are born each year . SCD is characterized by chronic hemolytic anemia and recurrent vascular occlusion, resulting in frequent episodes of acute pain and secondary organ damage . The pathophysiology of these painful vaso‐occlusive crises (VOCs) is complex and involves multiple processes, including inflammation, endothelial activation, increased cellular adhesion, and coagulation activation.…”

Pharmacotherapeutical strategies in the prevention of acute, vaso-occlusive pain in sickle cell disease: a systematic review

“…9 Moreover, patients frequently experience pain at home without seeking any health care support. 10,11 Aside from the direct physical morbidity of these recurrent painful attacks, other significant outcomes such as quality of life, school attendance, and societal participation of patients are greatly affected. [12][13][14][15][16][17][18] Moreover, high societal costs are involved.…”

Characterization of opioid use in sickle cell disease

“…Our results here showed that the majority of patients with SCD (60.1%) did not use opioids on a daily basis, either because some SCD patients had pain but did not require opioids or because not all SCD patients experience daily pain. Previous studies showed that SCD patients have self‐reported pain in 17% to 55% of the observed days . The calculated average daily opioid dose in this study was relatively low (less than 2 mg OME) among opioid users.…”

“…Previous studies showed that SCD patients have self-reported pain in 17% to 55% of the observed days. [16][17][18] The calculated average daily opioid dose in this study was relatively low (less than 2 mg OME) among opioid users.…”

“…Table 3) were used to identify inpatient and outpatient encounters, medical conditions and procedures. The study period consisted of a baseline (months 0-12) and observation period (months [13][14][15][16][17][18][19][20][21][22][23][24]. Information on characteristics including age, gender, concomitant nonsteroidal anti-inflammatory drug (NSAID) and hydroxyurea use, history of medical conditions, and history of health care utilization (hospital admission and ED visit) were collected at the baseline period (months 0-12); information on opioid use was collected during the observation period (months 13-24).…”