265833 Using administrative data sets to describe clinical care in sickle cell disease-Implications for public policy

Tuesday, October 30, 2012

Susan Claster, MD , Pediatrics,Children's Hospital Los Angeles, University of Southern California, Keck School of Medicine, Los Angeles, CA
Amanda Termuhlen, MD , Dept of Pediatrics, Miller Children's Hospital, University of Southern California, Keck School of Medicine, Long Beach, CA
Sheree M. Schrager, MS, PhD , Division of Adolescent Medicine, Children's Hospital Los Angeles, Los Angeles, CA
Courtney Johnson, MSW , Keck School of Medicine, University of Southern California, Los Angeles, CA
Tony Lo , Medical School, Western University of Health Sciences, Pomona, CA
Julie Wolfson, MD, MSHS , Depatrment of Pedatrics, City of Hope, Duarte, CA
Ellen Iverson, MPH , Division of Adolescent Medicine, Children's Hospital Los Angeles, Los Angeles, CA
Background: Sickle Cell Disease (SCD) affects 100,000 individuals in the United States. Advances in care have resulted in a growing population of adults with SCD. Without a parallel increase in the capacity to care for this group of patients, inequities have emerged in access to quality care and health outcomes. Most adult patients are hospitalized outside of SCD centers. Increased mortality in young adults following transition from pediatrics is often due to Acute Chest Syndrome (ACS), a life-threatening pulmonary process usually requiring blood transfusion. Recognition and appropriate treatment of ACS could represent a key indicator of care and promote wellness for adult SCD patients. Our recent query of the California Office of Statewide Health Planning and Development (OSPHD) database found that one-fifth of the hospital inpatient visits associated with the diagnosis of SCD between 2005 and 2008 were for ACS or a related pulmonary process. Despite NIH standard of care guidelines suggesting that transfusion should be used to treat ACS, we found that only 46% of those visits were associated with a transfusion, implying many patients are not receiving appropriate care. Administrative data allows researchers to access large populations but has not been validated for SCD. In light of recognized concerns regarding the relationship of coded diagnoses in administrative data to final clinical diagnoses, we compared OSHPD visit-level discharge data to three hospital databases. Methods: Hospital billing data from 2009-10 identified patients as having ACS. Equal numbers of cases were reported to OSHPD during the same time period. Primary and all secondary diagnoses were reviewed in administrative data. Chart reviews were conducted of identified cases. Results: Chart review identified a higher number of ACS visits in hospital data in light of cases in which ACS was investigated but not proven. More transfusions were identified in hospital data than OSHPD. The net effect was a lower transfusion rate in OSHPD (52.3% Hospital 1; 12.9% Hospital 2; 22.7% Hospital 3) than actual transfusion rate (77% Hospital 1; 50% Hospital 2; 50% Hospital 3). Conclusions: Administrative data is widely used to inform health policy, with OSPHD in particular widely used in California. However, these results suggest that using administrative data to assess clinical care for SCD may lead to inaccurate assumptions about quality of care, thus leading to continuous disparities in health care services.

Learning Areas:
Chronic disease management and prevention
Clinical medicine applied in public health
Public health or related public policy

Learning Objectives:
1.Participants will be able to identify recommended guidelines for treatment of acute chest in sickle cell disease 2.Participants will be able to discuss inequities in care for sickle cell patients 3.Participants will be able to discuss challenges in utilizing large databases for understanding treatment in sickle cell disease

Keywords: Access to Health Care, Medical Care

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I participated in the design and analysis of the study. I am the principal or co-investigator in many epidemiological studies looking at health outcomes in underserved populations. I have an interest in community health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.