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The medical home experience among children with sickle cell disease
Author(s) -
Raphael Jean L.,
Rattler Tiffany L.,
Kowalkowski Marc A.,
Mueller Brigitta U.,
Giordano Thomas P.
Publication year - 2013
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.24184
Subject(s) - medicine , medical home , logistic regression , multivariate analysis , primary care , family medicine , population , pediatrics , environmental health
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). Procedure 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. Pediatr Blood Cancer 2013;60:275–280. © 2012 Wiley Periodicals, Inc.