Abstract

Background: Acute episodes of pain are the most common cause of hospitalizations among individuals with sickle cell disease (SCD). Sleep disturbances are common in SCD. Sleep modulates mood, coping abilities, and cognition and have a potential to impact pain experience in SCD. Goal of our study was to explore relationship between sleep and pain burden in youth with SCD. Aims: To analyze the interaction between sleep and pain in a cohort of youth with SCD at Children’s National Hospital (CNH), which provides care to patients from Maryland, District of Columbia, and Virginia in the United States. Methods: Thirty-six individuals with SCD who participated in the studies approved by CNH IRB, including Integrative Clinic and Natural History of SCD, and completed surveys on sleep and pain burden were included in this analysis. Scores for a risk of chronic pain also known as “fibromyalgianess” were determined utilizing the Centralized Pain Index (CPI) and degree of sleep disturbances was assessed by Insomnia Severity Index (ISI) surveys as reported by patients. The number of pain admissions and total number of days hospitalized for pain were identified by reviewing electronic medical records (EMR). Results: Data from 36 patients was analyzed. The majority of patients were female (72.2%) and ranged 9-21 years in age. Seventy-two percent of patients were under the age of 18 years and HbSS was the dominant genotype (61.1%). Fifty-two percent of patients reported some degree of insomnia with 39% that met the definition of clinical insomnia. Seventeen % of patients met the criteria for fibromyalgianess. Patients with severe clinical insomnia (ISI scores 22-28) had the highest number of admissions and number of days hospitalized in 2 years following the initial evaluation. Patients meeting criteria for fibromyalgianess were more likely to report symptoms of clinical insomnia than those without (66 vs 34%). Summary-Conclusion: Sleep problems are common in youth with SCD and more than third of our study population had ISI scores suggestive of moderate or severe clinical insomnia. Patients with insomnia were more likely to have higher pain burden and CPI scores suggestive of fibromyalgianess suggesting likely association between sleep abnormalities and pain experience among youth with SCD. This association and impacts of interventions to improve sleep should further be investigated in SCD. - Characteristics of patients seen in integrative clinic at baseline visit and part of Natural History Study (N=36) Characteristics N(%) Gender Male 10 (27.8%) Female 26 (72.2%) Age in Years (9-21) < 18 26 (72.2%) ≥ 18 10 (27.8%) Genotype SS 22 (61.1%) SC 11 (30.6%) Sβ0 3 (8.3%) Insomnia Severity Index (ISI)4 0-7 No clinically significant insomnia 17 (47.2%) 8-14 Subthreshold insomnia 5 (13.9%) 15-21 Clinical insomnia (moderate) 10 (27.8%) 22-28 Clinical insomnia (severe) 4 (11.1%) Centralized Pain Index (CPI)1 0-12 W/O Fibromyalgianess 30 (83.3%) 13+ W/ Fibromyalgianess 6 (16.7%)

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