Sickle Cell Disease Functional Assessment Validation and SickleFit Exercise and Nutrition Pilot Intervention
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1 PROJECT SUMMARY/ABSTRACT 2 Median life expectancy for individuals with sickle cell disease (SCD) has improved substantially, 3 rising from 14 years in 1973 to approximately 61 years in recent academic center cohorts. 4 However, adults with SCD continue to face significant functional impairments. Physical, social, 5 and cognitive deficits arise from both age-related and disease-related complications such as 6 avascular necrosis, stroke, cardiopulmonary disease, and nutritional deficiencies. Currently, no 7 validated tools or interventions exist to assess or improve physical function in adults with SCD. 8 Without systematic recognition and management, these vulnerabilities accelerate functional 9 decline, disability, and early death. In a pilot study, we demonstrated that the Sickle Cell 10 Disease Functional Assessment (SCD-FA) is feasible, acceptable, and safe. Building on these 11 findings, this study will evaluate the validity and reliability of the SCD-FA in a prospective cohort 12 of adults with SCD (≥18 years) (Aim 1). We will evaluate the utility of the SCD-FA to predict 13 number of days hospitalized per year as the primary outcome, and Sickle Cell Day Hospital 14 visits, emergency department visits, dependence in Activities of Daily Living, and death as 15 secondary outcomes. We will also determine risk factors for impaired physical performance 16 (Aim 2). The SCD-FA will provide a comprehensive method to: (1) identify areas where people 17 with SCD are most vulnerable, (2) identify intervention targets, and (3) track functional changes 18 in response to interventions. We will adapt and pilot a combined SickleFit exercise and dietitian- 19 facilitated nutrition intervention for older adults with SCD (≥ 40 years) (Aim 3). SickleFit is a 20 virtual program derived from Gerofit, a proven supervised exercise program for older adults that 21 tailors activities to each person’s health needs. The expected outcome of this project is to 22 generate essential data to support a future multi-center randomized controlled trial of exercise 23 plus nutrition to improve function and quality of life in older adults with SCD. 24 Dr. Oyedeji is an Assistant Professor of Medicine in the Division of Hematology at Duke 25 University. Her career development plan emphasizes advanced training in psychometrics, 26 clinical trials, implementation science, and community-engaged research, guided by a 27 multidisciplinary mentorship team with expertise in psychometrics, geriatrics, exercise and 28 nutrition clinical trials, and SCD. Through this integrated program of research, coursework, 29 professional development, and mentorship, she will acquire the skills and experience necessary 30 to become an independent investigator and a leader in the fields of SCD and aging.
