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). 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 © 2012 Wiley Periodicals, Inc.
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ABSTRACT: This study aimed to examine insurance coverage, use of the healthcare system, satisfaction with care, transition from pediatric to adult healthcare services, and social and emotional support for individuals with genetic conditions. In June 2013, the National Genetics Education and Consumer Network surveyed US individuals with genetic conditions about their healthcare experiences. Chi square statistics were used to compare use of the healthcare system, satisfaction, social and emotional support of children (0-17 years) and adults (18 + years) with genetic conditions. There were 1895 valid responses (53.0 % individuals with genetic conditions, 47.0 % parents of these individuals). The findings suggest several potential areas to impact the quality of care received by this population. The majority of respondents reported that they had: (1) more than one health professional they considered to be their personal doctor or nurse (70.5 % children; 57.8 % adults); (2) providers that listened carefully to their needs always or most of the time (82.2 % children; 83.5 % adults); and (3) providers that usually or always involved them as partners in their care (78.4 % children; 66.6 % adults). However, several significant differences around care and support received between children versus adults and areas of need were reported. Most persons surveyed received care from a system of providers that was self- or parent- coordinated and lacked sufficient social and emotional support. Data from this study will inform practice and identifies further research needed to improve care provided to individuals with genetic conditions who require a combination of specialty and primary care.Maternal and Child Health Journal 02/2015; DOI:10.1007/s10995-015-1738-6 · 2.24 Impact Factor
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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.Maternal and Child Health Journal 01/2014; 18(8). DOI:10.1007/s10995-013-1429-0 · 2.24 Impact Factor
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ABSTRACT: Sickle cell disease (SCD) is marked by high utilization of medical services. The aim of this study was to determine whether having a patient-centered medical home (PCMH) is associated with a reduction in emergency care (ED) utilization or hospitalizations among children with SCD. We collected and analyzed data from parents of 150 children, ages 1 to 17 years, who received care within a large children's hospital. The primary dependent variables were rates of parent-reported ED visits and hospitalizations. The principal independent variable was parent-reported experience with an overall PCMH or its four individual components (regular provider, comprehensive care, family-centered care, and coordinated care). Multivariate negative binomial regression, yielding incident rate ratios (IRR), was used for analysis. Children who received comprehensive care had half the rate of ED visits (IRR 0.51, 95% confidence interval, 0.33-0.78) and nearly half the rate of hospitalizations (IRR 0.56, 95% confidence interval, 0.33-0.93) compared to children without comprehensive care. No other component of the PCMH was significantly associated with ED visits or hospitalizations. Children reported to have excellent/very good/good health status had lower odds of ED visits and hospitalizations compared to those reported to be in fair/poor condition. Children with SCD reported to experience comprehensive care had lower rates of ED encounters and hospitalizations after controlling for demographics and health status. The overall findings highlight that the provision of comprehensive care--having a usual source of care and no problems with referrals--may provide a strategy for improving pediatric SCD care.Journal of the National Medical Association 01/2013; 105(2):157-65. · 0.91 Impact Factor