Maternal and Child Health Journal

, Volume 18, Issue 8, pp 1854–1862

Access to Patient-Centered Medical Homes in Children with Sickle Cell Disease

Authors

    • Division of Hematology, Oncology and Stem Cell TransplantAnn & Robert H. Lurie Children’s Hospital of Chicago
  • Chibuzo O’Suoji
    • Division of Hematology, Oncology and Stem Cell TransplantAnn & Robert H. Lurie Children’s Hospital of Chicago
  • Paris S. Kingsberry
    • Division of Hematology, Oncology and Stem Cell TransplantAnn & Robert H. Lurie Children’s Hospital of Chicago
  • Stephanie A. Pelligra
    • Division of Hematology, Oncology and Stem Cell TransplantAnn & Robert H. Lurie Children’s Hospital of Chicago
  • Soyang Kwon
    • The Mary Ann and J. Milburn Smith Child Health Research ProgramChildren’s Hospital of Chicago Research Center
  • Maryann Mason
    • The Mary Ann and J. Milburn Smith Child Health Research ProgramChildren’s Hospital of Chicago Research Center
  • Alexis A. Thompson
    • Division of Hematology, Oncology and Stem Cell TransplantAnn & Robert H. Lurie Children’s Hospital of Chicago
Article

DOI: 10.1007/s10995-013-1429-0

Cite this article as:
Liem, R.I., O’Suoji, C., Kingsberry, P.S. et al. Matern Child Health J (2014) 18: 1854. doi:10.1007/s10995-013-1429-0

Abstract

To determine the proportion of children with sickle cell disease (SCD) followed in a subspecialty clinic with access to a primary care provider (PCP) exhibiting practice-level qualities of a patient-centered medical home (PCMH). We surveyed 200 parents/guardians of children with SCD using a 44-item tool addressing PCP access, caregiver attitudes toward PCPs, barriers to healthcare utilization, perceived disease severity, and satisfaction with care received in the PCP versus SCD clinic settings. Individual PCMH criteria measured were a personal provider relationship and medical care characterized as accessible, comprehensive and coordinated. Although 94 % of respondents reported a PCP for their child, there was greater variation in the proportion of PCPs who met other individual PCMH criteria. A higher proportion of PCPs met criteria for coordinated care when compared to accessible or comprehensive care. In multivariate models, transportation availability, lower ER visit frequency and greater PCP visit frequency were associated favorably with having a PCP meeting criteria for accessible and coordinated care. Child and respondent demographics and disease severity had no impact on PCMH designation. Average respondent satisfaction scores for the SCD clinic was higher, when compared to satisfaction scores for the PCP. For children with SCD, access to a PCP is not synonymous with access to a medical home. While specific factors associated with PCMH access may be identified in children with SCD, their cause and effect relationships need further study.

Keywords

Sickle cell diseaseHealthcare accessPrimary care providerMedical home

Copyright information

© Springer Science+Business Media New York 2014