Education, Employment, Social Support and Insurance Coverage in Adult Patients with Sickle Cell Disease

Introduction:

The average life expectancy of patients with sickle cell disease (SCD) has increased from early 20s well over 50 now. With improving pediatric healthcare, nearly all SCD patients become chronically ill adults, however little is known about these adult patients. This pilot study assessed adult SCD patients' age, education, literacy, employment, marital status, social support, and insurance status.

Methods:

A convenience sample of 100 sickle cell patients 18 and older cared for at academic medical system hematology clinic were enrolled in the study. A research assistant administered a structured interview which included demographic questions (insurance, education, employment, social support, marital status and persons taking care of them at home). PROMIS (Patient-Reported outcomes measurement information system) surveys assessed depression, anxiety and pain.Literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM-SF) and cognitive ability, using the Callahan 6-Item Screener.

Results: Patients ranged in age from 19 to 66 years (mean age - 33), 100% were African Americans, 52% females. Education was varied - over one third ( 37%) did not graduate from high school, 26% were high school graduates, 14% had some college, and 12% were college graduates. Literacy was extremely low. No patient read at or above a 9^th grade level, 99% < 6th grade level and 1% 7^th- 8^th grade. Only 16% were employed; 45% were married; 31% lived alone and 63% live with family. Almost all patients (98%) had insurance - 61% had Medicaid, 25% Medicare and 12% private insurance. Mean score of 5.77 on Callahan cognitive screener indicating patients did not need to be screened further for cognitive ability.

Conclusion:

Adult SCD patients in our study had very low education, literacy and employment levels. Many patients had inadequate social support. Our findings indicate that despite the fact that almost all patients were insured and theoretically had access to care, they still needed literacy and culturally appropriate information and on- going support to be able to understand and use health information and services to make appropriate health decisions and properly care for themselves.