Abstract
Abstract 4616
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.
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.
The results are depicted in the table.
Demographic Variables . | Overall N = 118 . | SC 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 | 8 | |
Gender (%) | NS | |||
Male | 58 (49) | 63 | 51 | |
Female | 60 (51) | 37 | 49 | |
Patient's Marital status (%) | NSà | |||
Divorced | 5 (4) | 7 | 1 | |
Married | 20 (16) | 30 | 15 | |
Never married | 89 (77) | 59 | 82 | |
Unknown | 3 (3) | 4 | 1 | |
Parents' marital status (%) | NSà | |||
Divorced | 20 (17) | 7 | 18 | |
Married | 43 (37) | 44 | 37 | |
Never married | 39 (33) | 30 | 34 | |
Separated | 2 (2) | 0 | 3 | |
Unknown | 13 (11) | 19 | 8 | |
Employment (%) | 0.0073 | |||
Currently employed | 26 (23) | 42 | 15 | |
Currently unemployed | 25 (22) | 27 | 18 | |
Never employed | 19 (16) | 4 | 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) | 0 | 1 | |
HS dropout/ grades 9,10,11 | 12 (10) | 4 | 15 | |
Other/vocational | 2 (2) | 4 | 1 | |
Health insurance (%) | 0.048 | |||
Medicaid | 59 (51) | 44 | 57 | |
Medicare | 11 (9) | 11 | 9 | |
None | 6 (5) | 15 | 1 | |
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 Variables . | Overall N = 118 . | SC 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 | 8 | |
Gender (%) | NS | |||
Male | 58 (49) | 63 | 51 | |
Female | 60 (51) | 37 | 49 | |
Patient's Marital status (%) | NSà | |||
Divorced | 5 (4) | 7 | 1 | |
Married | 20 (16) | 30 | 15 | |
Never married | 89 (77) | 59 | 82 | |
Unknown | 3 (3) | 4 | 1 | |
Parents' marital status (%) | NSà | |||
Divorced | 20 (17) | 7 | 18 | |
Married | 43 (37) | 44 | 37 | |
Never married | 39 (33) | 30 | 34 | |
Separated | 2 (2) | 0 | 3 | |
Unknown | 13 (11) | 19 | 8 | |
Employment (%) | 0.0073 | |||
Currently employed | 26 (23) | 42 | 15 | |
Currently unemployed | 25 (22) | 27 | 18 | |
Never employed | 19 (16) | 4 | 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) | 0 | 1 | |
HS dropout/ grades 9,10,11 | 12 (10) | 4 | 15 | |
Other/vocational | 2 (2) | 4 | 1 | |
Health insurance (%) | 0.048 | |||
Medicaid | 59 (51) | 44 | 57 | |
Medicare | 11 (9) | 11 | 9 | |
None | 6 (5) | 15 | 1 | |
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.
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.
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.