Abstract
Health care utilization of children with sickle cell disease (SCD) has been well documented due to an increase in the use of administrative data sets. While use of such data sources is relatively efficient and low cost, questions remain as to whether they provide sufficient information to fully characterize health care use. The aim of this study was to determine whether administrative data have the capacity to fully assess health care utilization among children with SCD. We studied the health care utilization of 154 low-income children with SCD in a managed care organization combining administrative data and medical record review. In our comparison, we found that administrative claims provided key information on the scope and location of health service use and that sole reliance on medical record review may undercount unique members and encounters.
Highlights
Sickle cell disease (SCD) is an inherited hemoglobinopathy that occurs in 1 in every 500 African American births (National Institutes of Health, 2002)
Medical services were defined as emergency care (ER), hospitalizations, hematology visits, primary care physician (PCP) visits, and radiologic imaging
The initial target population consisted of children ages 0 to 18 years who received health care services paid by Texas Children’s Health Plan (TCHP) at any time during 2007 and had a minimum of one medical service at Texas Children’s Hospital (TCH) during the same period
Summary
Sickle cell disease (SCD) is an inherited hemoglobinopathy that occurs in 1 in every 500 African American births (National Institutes of Health, 2002). The average medical fee for a child with SCD during childhood (age 0-18 years) is approximately US$1,354,000 (Kauf, Coates, Huazhi, Mody-Patel, & Hartzema, 2009) These studies indicate that despite progress in the evaluation and management of SCD (Halasa et al, 2007; Steinberg et al, 2003; Vichinsky, Hurst, Earles, Kleman, & Lubin, 1988), care of affected children continues to be high-cost and resource-intensive (Amendah, Mvundura, Kavanagh, Sprinz, & Grosse, 2010; Leschke et al, 2012; Mvundura, Amendah, Kavanagh, Sprinz, & Grosse, 2009; Raphael et al, 2009; Raphael, Mei, Mueller, & Giordano, 2012; Sobota, Graham, Neufeld, & Heeney, 2012)
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