Conflict of interest: Nothing to declare.
The medical home experience among children with sickle cell disease†
Article first published online: 22 APR 2012
Copyright © 2012 Wiley Periodicals, Inc.
Pediatric Blood & Cancer
Volume 60, Issue 2, pages 275–280, February 2013
How to Cite
Raphael, J. L., Rattler, T. L., Kowalkowski, M. A., Mueller, B. U. and Giordano, T. P. (2013), The medical home experience among children with sickle cell disease. Pediatr. Blood Cancer, 60: 275–280. doi: 10.1002/pbc.24184
- Issue published online: 14 DEC 2012
- Article first published online: 22 APR 2012
- Manuscript Accepted: 2 APR 2012
- Manuscript Received: 31 JAN 2012
- Pilot Research Award, Department of Pediatrics, Baylor College of Medicine/Texas Children's Hospital
- NIH 1K23. Grant Number: HL 105568-02
- health care utilization;
- sickle cell disease
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).
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.
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.
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. Pediatr Blood Cancer 2013;60:275–280. © 2012 Wiley Periodicals, Inc.