Adults and children with Sickle Cell Disease (SCD) living in the United States (US) report difficulty sleeping and evidence suggests the prevalence of sleep disturbances in this population is up to 50%. Although a high prevalence of sleep disturbances exists, this symptom has been understudied among adults with SCD compared to children and adolescents with the disease. SCD is a unique inherited hemolytic genetic disease that affects 90,000 to 100,000 Americans of mainly black or African American decent. It is one of the most prevalent genetic disorders in the US7 and causes red blood cells to become crescent shaped impairing oxygen transport and blocking blood flow through the small blood vessels. The associated tissue and organ damage causes pain, the most common patient-reported symptom of the disease. However, the relationship between pain and sleep disturbances is bi-directional, therefore, obtaining an understanding of sleep disturbances in this population is important. In addition to the impact on pain, sleep disturbances have other negative consequences including increased fatigue, decreased work productivity, increased risk of cardiovascular and metabolic disorders, immune response changes, increased use of unscheduled healthcare services, and diminished quality of life. The proposed study will add to existing research on symptom experience, health-related quality of life among patients with chronic diseases, and minority health by examining sleep disturbances among African American adult patients with SCD living on the East Coast of the US. Data from an existing prospective cohort study of patients with SCD living in the greater metropolitan DC area will be used.
The specific aims of the proposed study are to 1) identify situational, psychologic, and physiologic factors that are associated with sleep disturbances secondary to insomnia, and 2) examine the relationship between baseline sleep disturbances secondary to insomnia and quality of life at 6 month follow-up after controlling for pain and other potential covariates. Statistical analyses wil include descriptive statistics and regression modeling. In addition to the proposed research, the accompanying training plan will enable the applicant to become an independent scientist in sleep research and an expert in sleep medicine. The applicant, her sponsor, and co- sponsor have laid out a training plan, which includes multiple interdisciplinary research residencies on studies incorporating sleep as a study variable as well as additional coursework and training in somnology.
Sleep disturbances are a major public health problem among the general population and especially among individuals with chronic diseases, yet sleep disturbances have not been adequately examined among African American adults with Sickle Cell Disease (SCD). The proposed study will identify and examine predictors and outcomes of sleep disturbances among a sample of African American adults with SCD living on the East Coast of the US. Due to the bi-directional relationship between pain and sleep, this study will also add to existing research on pain in this population.