title: The medical home experience among children with sickle cell disease.
abstract: BACKGROUND
  While a large body of research documents acute care services for children with sickle cell disease (SCD), little is known about the primary care experiences of this population. The goal of this study was to determine to what extent children with SCD experienced care consistent with a patient-centered medical home (PCMH).
  
  
  METHODS
  We collected and analyzed data from 150 children, ages 1-17 years, who received care within a large children's hospital. The primary dependent variable was access to a PCMH or its four individual components (regular provider, comprehensive care, family-centered care, and coordinated care) as determined by parental report. Multivariate logistic regression was conducted to investigate associations between socio-demographic variables and having access to a PCMH.
  
  
  RESULTS
  Only 11% (16/150) of children qualified as having a PCMH, achieving the required thresholds in all four components. Approximately half of children had access to two or fewer components. Over 90% of children were reported to have a personal provider. Two-thirds of children had access to comprehensive care. Almost 60% of children were reported to receive family-centered care. Only 20% of children had access to coordinated care. No consistent associations were found between socio-demographic variables and having access to a PCMH or its individual components.
  
  
  CONCLUSIONS
  Within our study sample, children with SCD experienced multiple deficiencies in having access to a PCMH, particularly with respect to care coordination. However, further studies with larger samples are needed to determine associations between socio-demographic variables and having a PCMH.
authors.affiliation: Department of Pediatrics, Baylor College of Medicine, Hematology/Oncology, Houston, TX 77030, USA. raphael@bcm.edu
authors.forename: Jean L
authors.initials: JL
authors.lastname: Raphael
authors.forename: Tiffany L
authors.initials: TL
authors.lastname: Rattler
authors.forename: Marc A
authors.initials: MA
authors.lastname: Kowalkowski
authors.forename: Brigitta U
authors.initials: BU
authors.lastname: Mueller
authors.forename: Thomas P
authors.initials: TP
authors.lastname: Giordano
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell; D002648:Child; D002662:Child Health Services; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D007223:Infant; D008297:Male; D018802:Patient-Centered Care