Objectives of this project are to develop instruments and gather information to assist the health policy and research community in partnering with clinicians to plan a more effective and efficient system of care for persons with Sickle Cell Disease (SCD). This one-year project will result in a description of the existing service delivery system for SCD patients in central North Carolina, assessment of perceptions held by patient and health care providers about SCD patients' access to care, and a measure of patient satisfaction with current patterns of health care delivery for SCD. This information will provide a basis for developing and evaluating a more organized system of care encompassing comprehensive primary care, but structured around a disease management model. Evaluation activities in this project are proposed in the context of a long-term collaborative program in health services and health policy within the Duke-UNC Comprehensive Sickle Cell Center, University or North Carolina Hospitals, and the North Carolina Division of Medical Assistance.
Specific aims are to: (1) identify current sources of care for medicaid and medicare beneficiaries with SCD in central North Carolina,; (2) develop assessment tools measuring SCD patients' perceptions about current systems of care, assess their readiness to enroll in voluntary comprehensive managed care, and establish the validity of the assessment tools for predicting source and volume of services used by SCD patients; (3) identify factors affecting the probability that a health care professional or organization will participate as a provider in a comprehensive managed care program for SCD; (4) acquire comparative data from within North Carolina and from there states to assess feasibility of developing a capitated comprehensive system of care for SCD and other chronic diseases.
