Managing Sickle Cell Anemia: Use of Hospital, Emergency Department and Observation Unit Care over One Year.
Authors: O’Brien Judith A. , Pitoniak-Morse Clare , Ward Alex 
Published: October 2019

Sickle cell anemia (SCA) affects roughly 1 in 500 African Americans in the U.S., and there are approximately 72,000 known cases. Management consists primarily of treating symptoms and complications as there is no cure for SCA at present. Pain medications, transfusions, fluids and antibiotics are common treatments. Although these therapies could be administered potentially in routine outpatient settings, clinical and other circumstances may drive a patient to seek or receive care in other locations. This analysis examined use of non-routine locations of care defined as inpatient hospital care, Emergency Department (ED), and Observation Unit (OU) during one year by patients with SCA and the related costs. Using 2001–2002 Massachusetts statewide hospital, ED and OU data, a cohort of patients with SCA using these locations was identified by unique identifiers and an ICD-9 principal diagnosis code of SCA (282.60–282.69). Cases were limited to principal diagnosis to avoid inclusion of encounters that were primarily for complications, injuries or other conditions. A profile was established for each patient over the course of one year starting with the first stay or visit (index encounter) at any hospital, ED or OU in Massachusetts in 2001. From that index encounter, each hospital, ED or OU contact for SCA was tracked across the three locations for twelve months for that patient. Cost estimates, reported in 2004 US$, are limited to direct medical costs and include accommodations, ancillary and physician services. Fee schedules from 2004 were used for physician costs. Charges were adjusted by a 0.55 cost-to-charge ratio and appropriate medical inflation indices. A cohort of 436 patients with SCA was identified (females = 53%). The mean age was 20 years (median: 21.5) with 40% under age 17. A combined total of 2,258 hospital stays, ED visits and OU stays for SCA management were used by these patients during one year (mean non-routine encounters per patient = 5, range: 1–107). Hospital stays accounted for 50% of all encounters; 44% were ED visits and 6% were OU stays. SCA with crisis (ICD-9 code 282.62) was coded as the principal diagnosis in 90% of all encounters. Roughly half (49%) of the patients used more than one of these locations during the year. Distribution by location was: 30% inpatient hospital only [mean stays (range): 2 (1–23)]; 19% ED only [mean visits:2 (1–11)]; 2% OU only [mean stays:1 (1–3)]; 34% hospital and ED [mean combined encounters: 8, (2–107)]; 5% hospital and OU [mean combined: 5 (2–15)]; 3% ED and OU [mean combined: 4 (2–7)] and 7% used all three locations [mean combined:14, (3–49)].The mean hospital length of stay (LOS) was 5 days at an average cost of $6,830 per stay. The mean ED visit was 7.5 hours; average cost of $775 per visit. The mean OU LOS was 26 hours; average cost of $1,908 per stay. Medicaid was the responsible payer for most patients. The cumulative cost for hospital, OU stays and ED visits for this 436 patient cohort for one year was roughly $9.3 million (mean $21,300/pt) and this is a conservative estimate, as it does not include management costs for outpatient care or SCA-related complications. The results of this analysis show that these patients utilized non-routine sites of care frequently. Apart from the clinical consequences, these encounters represent a substantial personal and economic burden. Whether these care locations were used solely for clinical reasons, or were used due to lack of access to, or non-compliance with, care in the outpatient setting cannot be determined. This should be explored further.