The medical home experience among children with sickle cell disease

Raphael, Jean L.; Rattler, Tiffany L.; Kowalkowski, Marc; Mueller, Brigitta U.; Giordano, Thomas P.

doi:10.1002/pbc.24184

Cited by 17 publications

(18 citation statements)

References 40 publications

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“…As the authors concluded, this study indicated that children with sickle cell disease experienced numerous deficiencies in having access to a PCMH and that further studies were needed to assess whether or not the PCMH is an effective treatment model for children with sickle cell disease (9). It is important to note that further studies also need to be conducted to determine if the PCMH is an effective model for adults with sickle cell disease.…”

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confidence: 93%

“…7) Payment ''appropriately recognizes the added value provided to patients who have a patient-centered medical home beyond the traditional fee-forservice encounter.'' Data on the effectiveness of the PCMH among children with sickle cell disease was collected and analyzed for 150 children between the ages of 1 and 17 years, who received care within a large children's hospital (9). The primary dependent variable was access to a PCMH or four components of a PCMH (regular provider, comprehensive care, family centered care, and coordinated care) as determined by parental reports.…”

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confidence: 99%

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Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?

Ballas

Vichinsky

2015

Hemoglobin

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Recently, the patient-centered medical home (PCMH) emerged as a viable method to improve delivery of medical care. Due to all the promotion about the effectiveness of the PCMH, patients with sickle cell disease, their families and the community hoped that this could be a possible solution to the problems that arise in the treatment of adult patients with sickle cell disease. Review of the literature and review of the criteria for the establishment of a PCMH show that the PCMH is not an ideal model for patients with sickle cell disease because finding a personal physician, which is the first criteria of a functional PCMH, is a major problem in the process of transitioning the care of patients with sickle cell disease from pediatrics to adult care. Moreover, garnering hospital support to defray the initial costs to establish a PCMH for adults with sickle cell disease is unlikely given the already high costs of care for patients with sickle cell disease. Moreover, recent studies have shown insufficient evidence to determine the presumed beneficial effects of the PCMH, especially in patients with chronic disease.

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confidence: 93%

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confidence: 99%

Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?

Ballas

Vichinsky

2015

Hemoglobin

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“…34 A recent single-institution study assessed experience with PCMH care among children with SCD. 35 In this study, only 11% of children met the standards for receiving care in a PCMH. Although Ͼ 90% of children had a regular provider, they experienced deficiencies in multiple aspects of care: comprehensive care (67%), family-centered care (59%), and coordinated care (20%).…”

Section: The Pcmhmentioning

confidence: 66%

Sickle cell disease pain management and the medical home

Raphael

Oyeku

2013

Hematology

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Pain is the most common cause for hospitalization and acute morbidity in sickle cell disease (SCD). The consequences of SCD-related pain are substantial, affecting both the individual and the health care system. The emergence of the patient-centered medical home (PCMH) provides new opportunities to align efforts to improve SCD management with innovative and potentially cost-effective models of patient-centered care. The Department of Health and Human Services has designated SCD as a priority area with emphasis on creating PCMHs for affected patients. The question for patients, clinicians, scientists, and policy-makers is how the PCMH can be designed to address pain, the hallmark feature of SCD. This article provides a framework of pain management within the PCMH model. We present an overview of pain and pain management in SCD, gaps in pain management, and current care models used by patients and discuss core PCMH concepts and multidisciplinary team-based PCMH care strategies for SCD pain management.

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“…36 Children with SCD have multi-dimensional needs whether they be clinical, educational, or social. While comprehensive centers offer unique models of care, they are not accessible to most children with SCD and therefore ambulatory care for these children is primarily provided by primary care physicians.…”

Section: Introductionmentioning

confidence: 99%

Association of Care in a Medical Home and Health Care Utilization Among Children with Sickle Cell Disease

Raphael

Rattler

Kowalkowski

et al. 2013

Journal of the National Medical Association

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Objective 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. Methods 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. Results 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. Conclusions 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.

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The medical home experience among children with sickle cell disease

Cited by 17 publications

References 40 publications

Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?

Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?

Sickle cell disease pain management and the medical home

Association of Care in a Medical Home and Health Care Utilization Among Children with Sickle Cell Disease

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