II PILOT 3
Sleep Health in children and adolescents with sickle cell disease
Investigator: Seema Rani, MD
Profile
Dr. Seema is an Assistant Professor at the Thomas Jefferson University, Philadelphia, PA. She finished her medical school from India and practiced medicine in India for a few years before pursing USMLE. She completed her residency in Pediatric Medicine from Children’s Hospital at Montefiore, NY. She then went on to complete her fellowship in Pediatric pulmonary medicine at St Christopher’s Hospital for Children, PA where she stayed on as faculty member and served as the medical director of the division. She earned her fellowship degree in Sleep Medicine at Temple University. After completion of sleep medicine fellowship, she started as Assistant professor in Pediatrics at Nemours Children’s Hospital in Delaware. Her area of clinical interest is in sleep and pulmonary manifestations in children with Sickle Cell Disease. Her main area of research focusses on sleep health in children and adolescent with Sickle Cell Disease.
Project Summary
Sleep health is not just the absence of sleep disorder, but an overall index of wellness and satisfaction and an important target for health promotion. Persistent sleep problems in children are associated with high levels of psychosocial, somatic, and medical problems. Children with sickle cell disease(SCD) are at particularly increased risk for multiple sleep related issues due to sleep related breathing disorders, effects of pain and chronic illness on sleep, effects of medications, and other factors like increased periodic limb movements, restless leg syndrome, and nocturnal enuresis. Additionally, psychosocial constituents like poor sleep hygiene and unfavorable environment, socioeconomic status, mental and emotional impact of chronic disease, sleep culture, and parental stress can all affect sleep profoundly in these children. SCD and sleep have a multifaceted relationship with a complex pathophysiology that is still being explored. Lack of restorative sleep compromises physical, mental, and emotional health in children and may have a magnified impact on children with chronic illness like SCD. Poor quality and inefficient sleep are associated with increased inflammation, which plays a pivotal role in pathophysiology of SCD and its associated complications. Compared to the general pediatric population, children with SCD are at higher risk for both respiratory and non-respiratory sleep problems. However, the associations between non-respiratory sleep health metrics, SCD symptomology, daytime functioning, and quality of life are not well studied. Sleep related breathing disorders and nocturnal hypoxemia are associated with vaso-occlusive crises (VOC) in SCD, but how sleep quality and efficiency correlate with health care utilization (HCU) for pain is poorly understood. In children with SCD, one study evaluated pain and sleep pattern measured by actigraphy, however there are no studies correlating multiple sleep questionnaires with subjective and objective correlation of sleep patterns by means of sleep diary and actigraphy respectively.
To address this knowledge gap and validate prior research, the proposed study will characterize nonrespiratory sleep parameters, daytime functioning, and quality of life in children with SCD and age, race, and sex matched healthy controls as well as explore interactions between indicators of sleep health and HCU for pain in children with SCD. We will also evaluate correlations between subjective (sleep diary) and objective measures (actigraphy) of sleep patterns and disturbances in both groups, which have not been studied well and often not well perceived in children with SCD.