Background
Pain and sleep disturbances are prevalent complications experienced by pediatric patients with sickle cell disease (SCD). This study aims to identify associations between pain and sleep, and to characterize sleep chronotype and social jetlag in children and adolescent patients with SCD.
Methods
We performed a cross‐sectional survey of 105 pediatric patients with SCD aged 8–17 years using PROMIS (Patient Reported Outcomes Measurement System) pain interference, sleep disturbance, and sleep‐related impairment item banks. The μMCTQ (Ultra‐short Munich Chronotype Questionnaire) assessed chronotype and social jetlag. Analyses were performed to assess associations between PROMIS measures, sleep patterns, and clinical variables.
Results
Female participants reported higher T‐scores for sleep‐related impairment than males (females: 56.7 ± 10 vs. males 50.2 ± 9.4, p = .0009). Patients with one or more emergency department (ED) visits for pain in the last 12 months reported greater sleep disturbance (55.0 ± 8.5 vs. 50.7 ± 10, p = .046) and sleep‐related impairment (57.1 ± 9.3 vs. 52.1 ± 10.2, p = .03) than patients without any ED visits for pain in the last 12 months. Pain interference was significantly associated with both sleep disturbance (r = .49, p < .0001) and sleep‐related impairment (r = .46, p < .0001). The average mid‐sleep time was 4:14 ± 1:44 a.m. and the average social jetlag (hh:mm) was 2:32 ± 1:35.
Conclusion
Our study demonstrates that pain interference is associated with both sleep disturbance and sleep‐related impairment. PROMIS measures can identify patients that suffer from pain and sleep disturbances and highlights the need to conduct longitudinal prospective studies to define the directionality of pain and sleep in SCD.
IMPACT: This study is providing a telehealth intervention for the first time in patients with sickle cell disease with the goal of improving cognitive functioning and preparing adolescents for successful transition of care to adult healthcare providers. OBJECTIVES/GOALS: There is a high prevalence of cognitive impairment in adolescents with sickle cell disease (SCD). The purpose of this study is to test the efficacy of an individualized cognitive remediation program designed to promote not just cognitive function, but also adaptive and self-management skills necessary for successful transition to independence. METHODS/STUDY POPULATION: 12 participants with SCD (5 males, ages 10-16) participated in an individualized program, Cognitive-Remediation of Executive and Adaptive Deficits in Youth [C-READY], consisting of three main components: individual goal-based therapy, parent training sessions, and home skill practice. C-READY sessions occur one-on-one with a trained therapist for 8 sessions conducted over 4 weeks. Weekly parent training sessions are also conducted as part of the C-READY program. All of these sessions occurred via
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