1. Association of Socioeconomic and Age Group Status with Self- reported Health Outcomes of Persons with SCD in Rural and Urban Areas of North Carolina

2. AUTHORS/REFERENCE Aklaque Haque, PhD, Dept of Government and Public Services - Sch. Of Social and Behavioral Sciences, University of Alabama at Birmingham Joseph Telfair, DrPH, MSW/MPH, Sch. Of Public Health, University of Alabama at Birmingham Reference: Haque, A & Telfair, J (in press). Socioeconomic distress and Health Status: The Urban-Rural dichotomy of services utilization for persons with SCD in NC. J. Rural Health

3. Individuals with SCD and their families Members of the Duke/UNC CSCC Staff of the Four NC SC Community-based programs Duke/UNC CSCC Biometry Core David Redden CCC Biostatistical Core, UAB Thank You

4. BACKGROUND Research addressing risk factors associated with SCD - predominantly biomedical & bioclinical This research has led to reduced morbidity, better treatment outcomes & raised awareness of the need for comprehensive biomedical and psychosocial treatment strategies This research has failed to consider impact of the interaction of socioeconomic background and geographic distribution has had on health care delivery and medical outcomes

5. NC SCD Consortium provides much of the outreach, education, social, health and medical care NC SCD Consortium: 3 state level administrative and 9 (regional) level Educator/Counselor 5 major tertiary medical centers (only 2 serve adults) for comprehensive care 4 community-based centers  Consortium survey suggested differential access BACKGROUND: SCD IN NC

6. PURPOSE OF THE STUDY To gain an understanding of how access & utilization of services may be affected separately and interactively by age, socioeconomic conditions, geographic location, functional status, severity of disease & distance to medical care To introduce Social Epidemiological Methods to the study of issues impacting persons with SCD

7. METHODS: PARTICIPANTS 1189 [of 1298] adults and children with SCD at intake (1991-1995) Served by the three medical centers in the Duke/UNC CSCC (68%) of estimated SCD population in NC, consent obtained Intake Qs information self-reported demographic, medical history, psychological and social data objective physical exam, laboratory and medical records

10. METHODS: MEASURES Community Distress Index(CDI) Based on Haque’s Econometric Model 5 indicators of poor QOL based on 1990 U.S. Census Indicators income (Black per capita income) education (% Black not beyond HS) poverty (% Black below poverty) unemployment (% Black unemployed) not in labor force (% Black not in labor force) Index Score(SUM) - Low, Medium, High distress

11. METHODS: MEASURES SCD Interference Index (SCDII) - Child/Adult Based on Psychosocial Interference Scale (Kramer & Nash, 1992) 8 items for each (e.g., School/ Employment attendance, school/employment performance, household activities, etc.) Coding Interference - YES (1) NO (0) Amount of Interference - Rare (1) Somewhat (2) A lot (3) Index Score(SUM) - None, Low, Medium, High

12. METHODS: MEASURES Medical Problem Index (MPI) Index items based on anecdotal, clinical and evidence-based research information Event groupings (most common)- Problem (Acute Chest/Pneumo, Pain req Hosp) Condition (Ascep Nec Hips & Shoulders, Gallstones, eye problems) Infection (osteomyelitis, pyelonephritis) Procedure (cholecystectomy & splenectomy) Index score(SUM) - none, low, medium, high

13. Results Ia

14. Results Ib

15. Results Ic

16. Results II

17. CONCLUSIONS This study has allowed for the the investigation of the observation that a wide disparity has been observed in socioeconomic characteristics among urban and rural persons with SCD in NC When controlling for age and location, the significant relationships between indices persist. Specifically, rural clients of all ages live under relatively more distressed economic conditions than urban clients and younger clients are wore- off than older clients, yet for youngsters CDI is not a contributing factor to higher interference

18. Supports contention, youngsters with SCD, in NC have, in general, have better familial and systems level supports that may “buffer” physical and social consequences For adults the supports are limited and inadequate to compensate for hardships, especially in rural areas By changing the policy to create a more equitable of system of supports rural and age differentials can be effectively addressed These findings have particular implications for states with a 40% or greater rural population CONCLUSIONS

19. Limitations of the Study The study uses zip code linked SES data as the basis for determining CDI score areas, a very good proxy measure, but may fully reflect the individual level SES of the client Interference for children (not adolescents) is generally reported by parents and guardians, a good approach, but is limited by the parent’s perception Current research is underway in Alabama aimed at addressing these limitations and improving on this study