Home Based Primary Care for Patients with Sickle Cell Disease

Background: Sickle cell disease (SCD) is characterized by sickled red blood cells that can cause severely painful vaso-occlusive crises. These crises can cause damage to multiple organs and bring about additional chronic disease, such as avascular necrosis, leg ulcers, pulmonary hypertension, and renal failure. While there are options for disease modification, these are not effective if patients (pts) cannot attend regular doctor visits for their condition to be monitored and for medications to be adjusted. Obstacles to obtaining outpatient primary care include physical disability, environmental factors, transportation, and psychosocial factors. Impaired access to primary care leads to poor clinical outcomes in chronic diseases, such as SCD. This study was conducted to help pts with SCD who had the most barriers to obtaining outpatient primary care.

Home based primary care has proven beneficial for pts with chronic illnesses in the past. Utilizing this method, a physician meets with pts in their homes to manage both acute and chronic illnesses. This eliminates many potential barriers for pts with difficulty attending office visits and would provide continuity of care. It also allows physicians to observe other potential factors that could undermine the treatment plans for these pts, and get the correct member of the team to intervene more efficiently.

Methods: Outcomes were measured for patient quality of care and health service utilization, both one year prior to and one year after the home visits began. Data was collected from a chart review and included the number of primary care visits, day hospital referrals, and emergency department visits. SCD specific immunizations and the number of prescription refills were also noted. McNemar's test and Wilcoxon signed rank test were used to compare binary and continuous outcomes, respectively, during the years prior to and after home based primary care began.

Results: There were 23 SCD pts enrolled in this study, with 13 pts (69% female, 31% male) having completed one full year of home visits. These pts ranged from 26 to 66 years old. Comorbidities include one patient with a history of a myocardial infarction (MI) and two with diabetes mellitus. Other medical history noted were: acute chest syndrome (62%), thrombosis (62%), avascular necrosis (46%), retinopathy (46%), depression (38%), kidney disease (31%), hypertension (31%), pulmonary hypertension (23%), stroke (23%), and iron overload (15%). Most pts had received transfusions (92%), and 77% had taken hydroxyurea.

Pts received a median number of 11 home visits (range 7-15) during the 1-year program in which they received home based primary care. The median number of new long term prescriptions increased significantly (p = 0.04) from 1 to 3. Five pts not previously receiving PVC-13 vaccine started to receive it after the initiation of the home visit program (p = 0.06). The total number of immunizations (p = 0.09), months with prescription refills (p = 0.08) both increased slightly. There was no change in the number of new short term prescriptions, breast or colon cancer screening rates, nor influenza, PVC-23, or MenAWCY immunization rates.

The median number of reported vaso-occlusive crises per patient decreased from 8 per year to 5 (p = 0.69), and the median number of emergency department visits per patient decreased from 6 visits per year to 3 visits per year (p = 0.80).

Conclusion: Overall, home based primary care seems to be a promising alternative for pts with SCD. It had a significant impact on patient quality of care and may improve prescription adherence, but more data are needed to determine if it has an effect on healthcare utilization for pts with SCD.