Abstract 4616

Introduction

Despite improvements in diagnosis, preventive care and treatment, care of sickle cell disease (SCD) patients remains difficult. The majority are from lower socio-economic strata, poorly educated and from single parent households. The racial divide between patients (who tend to be almost all black) and their health care providers (who tend to be predominantly non black) can adversely affect the quality of care when stereotypes are assumed. We examined the demographic and socio-economic features of patients in our adult sickle cell disease program.

Patients and Methods

We retrospectively reviewed data on 118 patients that entered our program between February 2005 and October 2008. Our catchment area included parts of rural Mississippi, Tennessee and Arkansas as well as a major urban community. We reviewed the following demographic characteristics: age, gender, patient's marital status, parent's marital status, employment status, highest level of education, health insurance status and referral source. We then contrasted the characteristics of those with SC (which tends to be milder) with SS/Sβ0 sickle cell disease (which is phenotypically more severe). Continuous variables were evaluated using t-test. Chi-square test was used to assess categorical variables.

Results

The results are depicted in the table.

Demographic VariablesOverall N = 118SC n=27*SS/Sβ0 n=74*p-value
Age (mean ± s.d.) 26.5 ± 11.9 32.8 ± 14.9 24.4 ± 9.4 0.0104 
Age groups (%)    0.0343 à 
< 20 62 (53) 33 55  
20 to < 30 22 (19) 19 20  
30 to < 40 18 (15) 19 16  
40 and greater 16 (13) 30  
Gender (%)    NS 
Male 58 (49) 63 51  
Female 60 (51) 37 49  
Patient's Marital status (%)    NSà 
Divorced 5 (4)  
Married 20 (16) 30 15  
Never married 89 (77) 59 82  
Unknown 3 (3)  
Parents' marital status (%)    NSà 
Divorced 20 (17) 18  
Married 43 (37) 44 37  
Never married 39 (33) 30 34  
Separated 2 (2)  
Unknown 13 (11) 19  
Employment (%)    0.0073 
Currently employed 26 (23) 42 15  
Currently unemployed 25 (22) 27 18  
Never employed 19 (16) 24  
Student 44 (39) 27 42  
Education (%)    NSà 
College 35 (32) 36 30  
GED/ finished HS 60 (55) 56 52  
Grades K-8 1 (1)  
HS dropout/ grades 9,10,11 12 (10) 15  
Other/vocational 2 (2)  
Health insurance (%)    0.048 
Medicaid 59 (51) 44 57  
Medicare 11 (9) 11  
None 6 (5) 15  
Third party 41 (35) 30 32  
Referral source (%)    NSà 
PCP/Other 38 (32) 41 36  
Self 22 (19) 22 19  
SJCRH 58 (49) 37 50 
Demographic VariablesOverall N = 118SC n=27*SS/Sβ0 n=74*p-value
Age (mean ± s.d.) 26.5 ± 11.9 32.8 ± 14.9 24.4 ± 9.4 0.0104 
Age groups (%)    0.0343 à 
< 20 62 (53) 33 55  
20 to < 30 22 (19) 19 20  
30 to < 40 18 (15) 19 16  
40 and greater 16 (13) 30  
Gender (%)    NS 
Male 58 (49) 63 51  
Female 60 (51) 37 49  
Patient's Marital status (%)    NSà 
Divorced 5 (4)  
Married 20 (16) 30 15  
Never married 89 (77) 59 82  
Unknown 3 (3)  
Parents' marital status (%)    NSà 
Divorced 20 (17) 18  
Married 43 (37) 44 37  
Never married 39 (33) 30 34  
Separated 2 (2)  
Unknown 13 (11) 19  
Employment (%)    0.0073 
Currently employed 26 (23) 42 15  
Currently unemployed 25 (22) 27 18  
Never employed 19 (16) 24  
Student 44 (39) 27 42  
Education (%)    NSà 
College 35 (32) 36 30  
GED/ finished HS 60 (55) 56 52  
Grades K-8 1 (1)  
HS dropout/ grades 9,10,11 12 (10) 15  
Other/vocational 2 (2)  
Health insurance (%)    0.048 
Medicaid 59 (51) 44 57  
Medicare 11 (9) 11  
None 6 (5) 15  
Third party 41 (35) 30 32  
Referral source (%)    NSà 
PCP/Other 38 (32) 41 36  
Self 22 (19) 22 19  
SJCRH 58 (49) 37 50 

Abbreviations: SHPFH, sickle hereditary persistence of fetal hemoglobin; GED, General Educational Development; HS, High School; SJCRH, St. Jude Children's Research Hospital, PCP primary care provider

*

Excludes 17 patients with Sβ+/SHPFH/other, not included in the comparison because of the small numbers.

Statistically significant at significant level 0.05

àCells had inadequate number of counts. Chi-square may not be a valid test.

Conclusions

We describe the demographic and socio-economic features of a cohort of 118 patients seen in an academic center with a diverse catchment area. In spite of adverse family circumstances, relatively high proportion of the cohort was college educated (32%) or graduated from high school/GED (55%). 61% of the patients are either currently employed or current students. These results are quite contrasting to the general perception about the adult sickle cell disease population.

Disclosures:

No relevant conflicts of interest to declare.

Author notes

*

Asterisk with author names denotes non-ASH members.

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