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Insurance Status as a Sociodemographic Risk Factor for Functional Outcomes and Health-related Quality of Life Among Youth With Sickle Cell Disease

Robinson, M. Renee PhD; Daniel, Lauren C. PhD; O’Hara, Emily A. MS; Szabo, Margo M. BS; Barakat, Lamia P. PhD

Journal of Pediatric Hematology/Oncology: January 2014 - Volume 36 - Issue 1 - p 51–56
doi: 10.1097/MPH.0000000000000013
Original Articles

Youth with sickle cell disease (SCD) are at risk for functional limitations and poor health-related quality of life (QoL). This study examined sociodemographic factors that may interact with medical complications to reduce functional ability and QoL among youth with SCD. Fifty-three patient/caregiver pairs (children 8 to 18 years; M=12.3 y) with SCD completed the Functional Disability Inventory and Pediatric Quality of Life Inventory questionnaires. Medical database reviews were conducted to collect health care utilization, disease complications, and sociodemographic information; insurance type (public vs. private insurance) and family zip code to access Census tract data reflecting neighborhood distress. Insurance type, but not neighborhood sociodemographic risk indicators, was significantly associated with disease-related complications and QoL. There were significant differences in both health care utilization and QoL by insurance type. Complications were higher in the group with public insurance. Insurance type seems to be more strongly related to disease outcomes and QoL than neighborhood sociodemographic distress. Closer attention to the contribution of insurance type to health outcomes may provide important insight to potential barriers for disease management. These issues are critically important for health care efficiency and equity for poor and underserved children with chronic health conditions.

*Department of Pediatrics/Drexel University College of Medicine/Division of Hematology, St. Christopher's Hospital for Children

The Children’s Hospital of Philadelphia

Division of Oncology, Department of Pediatrics, Perelman School of Medicine of the University of Pennsylvania, Philadelphia, PA

Department of Psychology, University of Hartford, West Hartford, CT

§Department of Psychology, West Virginia University, Morgantown, WV

Grant support to the M.R.R. through PHEC Reunification Endowments Franklin Trust, Drexel University College of Medicine, Department of Pediatrics, Division of Hematology, St Christopher’s Hospital for Children, Philadelphia, PA.

The authors declare no conflict of interest.

Reprints: Lamia P. Barakat, PhD, Department of Pediatrics, Perelman School of Medicine of the University of Pennsylvania, Division of Oncology, The Children’s Hospital of Philadelphia, 3501 Civic Center Boulevard, 10303 CTRB, Philadelphia, PA 19104 (e-mail:

Received May 6, 2012

Accepted August 20, 2013

Copyright © 2014 Wolters Kluwer Health, Inc. All rights reserved.