Access to Patient-Centered Medical Homes in Children with Sickle Cell Disease

Maternal and Child Health Journal (Impact Factor: 2.24). 01/2014; 18(8). DOI: 10.1007/s10995-013-1429-0
Source: PubMed


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.

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    ABSTRACT: AimsThe aims of this study were: to (1) identify barriers to care in children with sickle cell disease; (2) examine the quality of primary care services received by these children and (3) examine the relationship between barriers to care and quality of primary care services in children with sickle cell disease.Background Effective management in children with sickle cell disease requires early access to a comprehensive range of preventive screenings, urgent care treatments for vaso-occlusive pain crisis and ongoing prophylactic treatments.DesignA cross-sectional survey of parents of children with sickle cell disease was conducted between April–September 2011.Methods Parents of children with sickle cell disease completed the Barriers to Care Questionnaire and Parent's Perceptions of Primary Care.ResultsParents of children with sickle cell disease (n = 38) reported health system barriers such as inability to contact doctors or clinics, extended wait times and inconvenient clinic hours. Some barriers were reported more frequently among children with concurrent sickle cell disease and asthma, compared with those children without a concurrent asthma condition. Parents who reported more barriers were least likely to perceive their care as accessible, comprehensive and coordinated.Conclusions Minimizing healthcare barriers may improve the quality of primary care services received by children with sickle cell disease and consequently prevent complications associated with sickle cell disease.Implications for nursing practiceNurses and other care providers need to identify healthcare barriers, so that access, coordination, comprehensiveness and overall quality of primary care services may be improved in children with sickle cell disease.
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