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: 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: The purpose of this study was to identify rates of adherence for three outpatient quality indicators noted by Wang et al. (Pediatrics 2011;128:484–493): (1) influenza vaccine, (2) pneumococcal immunizations, and (3) penicillin prophylaxis in patients with sickle cell disease (SCD) in a Medicaid sample. These variables were chosen based on Wang and colleagues' suggestion that these variables are important for the assessment of the quality of care of children with SCD. We hypothesized that the overall rate of adherence would be poor with adults having worse rates of adherence than children. We conducted a retrospective cohort study using the Wisconsin State Medicaid database over a 5-year period to assess the preventative medication adherence of individuals with SCD. Preventative medication variables in this study included influenza vaccination, pneumococcal immunizations (PCV7, PPV23), and penicillin prophylaxis. As predicted, the 2003–2007 Wisconsin State Medicaid database showed patients with SCD had low adherence in terms of recommended influenza vaccinations (21.58% adherent), PPV23 pneumococcal immunizations (43.47% adherent), and penicillin prophylaxis (18.18% adherent). Pneumococcal immunizations for PCV7 were higher than expected (77.27% adherent). Although children tended to adhere to recommended preventative medications more than adults, overall adherence was low. Although we cannot explain why adherence is low, it is likely due to multiple factors at the patient- and provider-level. We encourage patients and providers to create a partnership to meet adherence recommendations, and we describe our strategies for increasing adherence. Am. J. Hematol. 89:256–260, 2014. © 2013 Wiley Periodicals, Inc.American Journal of Hematology 03/2014; 89(3). DOI:10.1002/ajh.23627 · 3.48 Impact Factor
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ABSTRACT: Veterans Health Administration (VHA) seeks to improve the delivery of patient-centered care. A Patient-Centered Medical Home (PCMH) Model, named Patient Aligned Care Team (PACT), was implemented to transform the VHA primary care delivery process. VHA used a collaborative learning model as a key approach to disseminate PACT concepts and changes. To describe and examine VHA's experience disseminating PACT transformation using a Breakthrough Series Collaborative method. Observational study. Approximately 250-350 individuals from 141 teams participated in six face-to-face learning sessions across 21 months. 1) PACT Collaborative participant surveys; 2) Coach Assessment Scores and Plan-Do-Study-Act (PDSA) data; and 3) PACT Compass (national measures to assess PACT implementation within VA healthcare system). A majority of the participants indicated that the PACT Collaborative was necessary to implement PACT. The number of PDSAs increased steadily during the Collaborative period; 93 % (n = 1,547) of PDSAs were successfully implemented. Teams successfully achieved over 80 % of their aims, which were highly correlated with PDSAs implemented (R(2) = 0.88). The most successful aims achieved were offering same-day appointments, increasing non-face-to-face care, and improving team communication. PACT Compass indicated an improvement after the Collaborative (p-value < .000), and providers observed differences in their care practice (p-value < 0.002). This positive impact may be due to the spread of the PACT Model through the PACT Collaborative, among other learning initiatives. For complex collaborative models such as PACT, more than three learning sessions may be required. As VHA continues to disseminate the PACT Model through primary care, into specialty/surgical care and beyond, the Collaborative Learning Model may continue to be an effective way to leverage a small number of faculty, coaches, and industrial engineers across an extremely large population.Journal of General Internal Medicine 04/2014; 29. DOI:10.1007/s11606-014-2773-5 · 3.42 Impact Factor