The Foundation for Sickle Cell Disease Research (FSCDR) opened a comprehensive multi-specialty center to address the growing trend of fragmented care, and an increase in emergency room and inpatient utilization in adolescents and adults with sickle cell disease.
Sickle Cell Disease (SCD) is an inherited blood disorder that primarily affects people of African descent. One in 396 African Americans in the United States (US) has SCD, and one in 14 carry the trait. Sickle Cell Disease occurs among approximately 1 out of every 36,000 Hispanic-American births.
Although medical treatment for SCD has improved dramatically, median survival for all patients with SCD is 61 years, significantly lower than that for African-Americans without SCD. In SCD, red blood cells (RBCs) become adherent and dehydrated, as well as sickle-shaped when deoxygenated, causing them to clump together and stick to blood vessel walls. These processes decrease blood flow and lead to frequent vaso-occlusive painful episodes and chronic organ damage. Vaso-occlusion is responsible for debilitating SCD complications, including renal and pulmonary disease, aseptic necrosis of bone, retinopathy, and stroke.
An analysis of National Center for Health Statistics multiple-cause-of death files to examine age at death and to calculate mortality rates from 1979 to 2005 identified 16,654 sickle cell-related deaths. Of those, mean age at death was significantly different for males (33.4 years) than for females (36.9 year).
Florida has the highest population of individuals with SCD in the US. Hassell and Brousseau JAMA 2010, reviewed Medicaid claims data from 8 geographically diverse states with 109,344 encounters by 21,112 people from AZ, CA, FL, MA, MO, NY, SC, TN. Ninety-four percent had been to the Emergency Department (ED), 77% had a hospital admission. Thirty-seven percent of the encounters were by children
There is growing evidence of increased mortality in adolescents and adults. Sickle Cell Disease-related problems result in a disproportionately high use of healthcare resources. The combined financial impact of both emergency department and hospital utilization charges for SCD has been estimated at $2.4 billion annually. Most patients have public insurance as the payer source.
The disease is an economic burden to patients and their families, many of who are already socially and economically disadvantaged.
The most common cause for hospitalizations and other acute care visits and the hallmark of SCD is pain or crisis. Fourteen and 30-day rehospitalization rates as high as 28.4% and 41%, respectively, have been described. Acute care visits to the ED and day hospital also highlight the high healthcare utilization by patients with SCD.
SCOPE OF SERVICES
Sickle cell disease is a chronic disease. However, more than 80% of adults do not visit a primary care provider to help manage their disease. The chronic lack of preventive care and inappropriate utilization of acute care services have lead to poor health outcomes secondary to fragmented care and lack of providers for adults with SCD.
The Foundation for Sickle Cell Disease Research provides the following services:
- Treatment by a hematologist oncologist
- Sickle Cell trained RN
- Port Access for blood drawing and flushing
- Program to assist patients with adherence to treatment recommendations
- Program to reduces visits to the emergency room
- Program to reduce inpatient hospitalization
- Program to eliminates thirty day hospital readmission for patients enrolled in chronic care management
- Patient tailored pain management
- Disability Evaluation
- School IEP
- Social resource needs assessment (Partner with Department of Children & Families)
- Neurocognitive evaluation with a neuropsychologist
- Ongoing Quality improvement
- Post hospital discharge follow-up
- Preventive health services
- Flu vaccine
- Vaccinations for adult
- Care Coordination
- Chronic Care Management
- Patient-centered medical home
- Specialty care referral
- Clinical Research
- Medic-Alert Foundation bracelet
Care coordination, involves multiple providers and sources of services. Our providers collaborate through the SCD Electronic Health Record (EHR). We have established the conditions and infrastructure for assuring quality referrals and follow-up.
The FSCDR assumes responsibility and makes the effort to coordinate care and grow provider relationships. Our process supports specialists being able to understand each other’s expectations and preferences. Our patients and their families help ensure effective and efficient referrals as they are adequately informed and supported to play an active role.
Because of the critical importance of reducing ER and hospital care, FSCDR has partnered with the MedicAlert™ Foundation to provide individualized sickle cell protocols for acute care, pertinent complication history and co-morbidities. MedicAlert™ clinical specialists are available 24/7 to provide live clinical support to authorized providers. FSCDR’s physicians update the patient’s sickle cell MedicAlert™ protocol. MedicAlert™ will notify the ED and the FSCDR when a patient has been admitted or goes to the ED. Therefore, our care team begins care coordination as soon as the patient is admitted.