Access of urban dwelling SCD patients to state-of-the-art primary and tertiary care (research, education and clinical services) decreases SCD morbidity mortality. However in rural states like Alabama the impact of SCD patient access to tertiary care services is not clearly. To address the lack of access and availability of tertiary care services for Northern and Central Alabama SCD children, youth (0-18 years) and their families, a community based regionalized children and youth SCD service network CYSN was proposed and funded by MCHB in 1995. The CYSN service and research infrastructure is now in place. Eight regional clinical with a 150 mile radius of Birmingham offer tertiary care services to 975 SCD patients (0- 18 years and 55 SCD newborns annually) who are a 50 50 urban rural mix. Since the CYSN is established as a research and service tool, we propose a study to systematically access impact of primary care, tertiary care and educational interventions on multidimensional outcomes in rural and urban SCD patients. The overall study goal is to longitudinally evaluate educational and research impact on three CYSN health system dimension: 1) patient care, education and counseling; b) primary care provider development and education;c) health care systems function and structure. Working with a multidisciplinary CYSN network staff, a multi-conceptual framework of community-oriented primary care and empowerment evaluation will compare pre-intervention and post-intervention behaviors of patients, providers and healthy systems.
Our specific aims are 1) Document and assess the effect of SCD patients and parents participation in CYSN interventions on a) care access/utilization patterns, b) care outcomes, c) knowledge specific to SCD, d) reception/utilization of counseling; 2) Document and assess impact on interventions on primary providers change in: a) willingness to care for and learn about SCD patients and families, b) willingness to establish standards of primary care for children and interact with tertiary providers to care of SCD children and youth, c) general SCD knowledge and use standards of primary and tertiary care. 3) Document and assess impact and interventions on the CYSN system structure and function, a) site provider and client care cost; b) care system structure and facility organization; c) third party payers response to funding for care. 4) To document and assess impact of intervention on problem areas including 1) developmental and psycho neurological aspects of development of children and 2) pneumoccal sepsis. CYSN also provides a clinical study network within which to pursue basic and clinical research questions which are shared projects of the UAB Comprehensive Sickle Cell Grant=P60HL584189002 Title: Establishment and use of the Alabama SCD Client Registry Rationale: While past efforts on the part of researchers and professionals have lead to more effective treatments of the complications associated with SCD and little is known about the social epidemiology of SCD (that is, critical and accessible data on the physical, psychological and social aspects of SCD). Questions about the access, differential outcomes, and use of health and social services of persons with SCD, remain largely unanswered. To begin to add new knowledge to our understanding of the lives of persons with SCD, and to provide a state-level sociological counterpart to the CSSCD, the UAB Comprehensive SCD Center proposes to establish, maintain and use a registry for persons with SCD in Alabama.
Specific Aim : 1. To develop and implement a SCD client registry for the purpose of maintaining key epidemiologic, socio-demographic, health care and social data on persons with SCD that will be used for planning clinical care, case management, advocacy, and research. 2. To use the first wave core and supplemental data from the registry to a:0 describe the frequency and demographics of SCD in Alabama; 2) document the prevalence of i) self-reported illness experiences, and ii) health and human services access and use, of persons with SCD in Alabama; and c)test two research hypothesis identifying factors associated with the differential services experiences, gaps and barriers in the access to, and use of, the existing human and health care services system for persons with SCD in Alabama. These hypotheses are 2.1 Persons with SCD (or their parental caretakers) living in urban countries of Alabama will be more likely to report greater knowledge of available services (perceived availability), greater access to (perceived access), use of, and satisfaction with these services, than rural persons with SCD. 2.2 Children and adolescents with SCD (or the primary caretakers) living in Alabama will be more likely to have reports of greater knowledge of available services (perceived availability), greater access to (perceived access), use of, and satisfaction with these services, than adults with SCD living in Alabama. Methodology: Based on Specific Aim 1: The development of a SCD Registry will involve two phases: planning and development (months 1-11 of year 1) and implementation (years 2 through 3 and every two years thereafter). Based on Specific Aim 2: Beginning in Year 4, wave one data from the registry will be organized and linked with state-level data. Using epidemiologic methods client characteristics, service use, access and satisfaction patterns will be documented; using bivariate and multi-variable statistics and the framework of the Anderson and Aday Access model as a guide, hypothesized relationships will be tested and conclusions will be drawn.
Showing the most recent 10 out of 22 publications
