Parents of children with sickle cell disease often seek care at large, university based sickle cell clinics. A major health care barrier for children in Alabama involves the cost and time of travelling to and from university based clinics. To reduce this health care barrier, the University of Alabama at Birmingham (UAB) developed The Children and Youth Sickle Cell Network(®) (CYSN(®)). This network consists of the central sickle cell clinic located at UAB and four outreach sickle cell clinics located in Montgomery (100 miles south of UAB), Opelika (110 miles southeast of UAB), Huntsville (100 miles north of UAB), and Tuscaloosa (60 miles west of UAB). The goal for these clinics is to maintain a similar level of medical care while reducing the health care barrier of transportation.
To determine if the outreach clinics provide similar care to university based clinics, we evaluated three surrogate preventive care markers to compare access to care in central vs. outreach clinics: 1) attendance rates, 2) number of patients on hydroxyurea, and 3) percent of MRIs obtained for screening of silent infarct among eligible patients.
A retrospective review of all CYSN(r) clinic visits from June 2012 to June 2013 was performed to determine clinic attendance rates. All patients on hydroxyurea were categorized by clinic location. Every patient attending CYSN(r) clinic between ages of 6 and 15 years had their medical record reviewed for completion of a screening MRI/MRA.
At the central Birmingham clinic, the appointment show rate was 59.8% as compared to the Montgomery, Opelika, Huntsville, and Tuscaloosa show rates which were 57.7%, 73.1%, 59.4%, and 70% respectively. At UAB, institutional guidelines were developed for offering hydroxyurea to patients based on clinical indications and applied to all clinics. The percentage of patients on hydroxyurea therapy in Birmingham is 22.2%, while the percentages in Montgomery, Opelika, Huntsville, and Tuscaloosa are 21.5%, 32%, 21.4% and 24.4%, respectively. Finally, screening MRI/MRA to evaluate for evidence of silent cerebral infarctions is performed in Birmingham but offered to children ages 6-15 years at all sickle cell clinics. In Birmingham, 63.6% of eligible patients completed MRI/MRA screening. This percentage is similar for patients in Montgomery, Opelika, and Tuscaloosa who were screened at 66.7%, 83.3%, and 67.7% respectively.
Our data suggests that outreach clinics can provide similar levels of medical care for children with sickle cell disease. Sickle cell centers treating patients that must travel long distances should consider developing outreach clinics to help reduce this major health care barrier.
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.
