Objectives The current study utilized mHealth technologies that were objective (e.g., sleep actigraphy and pulse oximetry) and time-sensitive (e.g., ecological momentary assessments [EMAs]) to characterize sleep in youth with sickle cell disease (SCD) and investigate the relationships between sleep variables and pain. It also investigated the influence of age on sleep and the sleep–pain relationship. Methods Eighty-eight youth with SCD (aged 8–17 years) were recruited from three regional pediatric SCD clinics. Youth completed twice daily EMAs for up to 4 weeks to assess nighttime subjective sleep quality and daily pain. They also wore a sleep actigraph for 2 weeks to assess sleep duration, sleep efficiency, and sleep latency, and a wrist-worn pulse oximeter for two nights to assess whether they had sleep apnea. Multilevel models were calculated predicting daily SCD pain using the sleep variables, age, and the interaction between age and the sleep variables. Results None of the sleep variables were related to one another. Poor subjective sleep quality during the night was related to high pain severity the next day, and high pain was related to poor subjective sleep quality that night. Older age was associated with poorer subjective sleep quality, shorter duration of nighttime sleep, and high sleep latency. Also, findings indicated that as age increased, the strength of the relationship between poor continuous subjective sleep quality and high pain severity increased. Conclusions Future research is needed to examine possible mechanisms connecting subjective sleep quality to high pain.

The aims of the current study were to investigate whether SCD incurs an additional risk for poor sleep over and above the influence of sociodemographic factors (ie, race and sex) during adolescence, and to explore the relationships between sociodemographic, physical (ie, age and pubertal status), and disease-related factors (ie, SCD genotype and hydroxyurea use) on sleep problem risk during adolescence. Black adolescents (age, 12 to 17 y) with SCD (n=53) were recruited from regional pediatric SCD clinics in the southeast and a sample of healthy black adolescents (n=160) were recruited from middle and high schools. Regression analyses indicated that SCD was uniquely related to sleeping more, and worse sleep quality over and above the influence of sociodemographic factors. Having a more severe SCD genotype was related to worse sleep quality and higher pubertal status was related to sleeping longer during the week. Results indicate the need for systematic assessments of sleep problems, with more a focus on youth with more severe genotypes and higher pubertal status. Future research should focus on characterizing trajectories of sleep problems in this population, identifying key risk factors, and elucidating mechanisms linking risk factors to sleep problem risk to aid in tailoring interventions for this population.

Background The aims of this study were to describe guardian perceptions of the experiences of a sample of youth with SCD in rural EDs with a focus on overall patient satisfaction and characteristics of care. Procedure Guardians of 139 children with SCD (0–17 years) seen at a rural pediatric SCD clinic completed a survey concerning their children’s ED experiences in the past 6 months, including information about ED wait times, quality of communications and interactions with the ED health care providers (HCPs), pain management, perceptions of speed of care, and overall satisfaction. Results About 41% of guardians reported that their child visited the ED in the past 6 months. Guardians reported moderate satisfaction with ED care. About 25% of those who visited the ED indicated that HCPs did not spend enough time with them and their children did not receive speedy care. Shorter ED wait times and higher ratings of speed of care predicted higher satisfaction. Conclusions Families of youth with SCD are experiencing longer wait times in rural EDs which contribute to dissatisfaction with care. Efforts are needed to develop strategies to reduce ED wait times and improve speed of care which may improve outcomes following ED care.

Objective:The purpose of the current study was to investigate the influence of sleep on the relationship between pain and health care use (HCU) in youth with sickle cell disease (SCD). It was hypothesized that poor sleep would be related to higher HCU and would strengthen the relationship between high pain frequency and more HCU among youth with SCD.Methods: Ninety-six youth with SCD (aged 8-17 years), and their guardians, were recruited from three regional pediatric SCD clinics. Guardians reported on the youth's pain frequency and HCU using the Structured Pain Interview for Parents, and youth wore a sleep actigraph for up to two weeks to assess sleep duration and sleep efficiency. A series of regression models were calculated with the following outcomes: emergency department visits, hospitalizations, and health care provider contacts.Results: Inconsistent with hypotheses, poor sleep was not directly related to HCU. Also, higher sleep duration appeared to strengthen the relationship between high pain frequency and more ED visits. Conclusions:Findings suggest that good sleep may serve as protective factor for better matching pain to HCU. Results should be interpreted in the context of study limitations. Future research is needed to investigate possible mechanisms linking sleep duration to HCU in response to pain and to ascertain if sleep patterns influence the relationship between pain and other functional outcomes in youth with SCD. Clinically, these findings support the need to acknowledge and address the role that sleep plays in responding to SCD pain in pediatric populations.