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.
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References
Epperly, T. (2011). The patient-centred medical home in the USA. Journal of Evaluation in Clinical Practice, 17(2), 373–375.
Rittenhouse, D. R., Thom, D. H., & Schmittdiel, J. A. (2010). Developing a policy-relevant research agenda for the patient-centered medical home: A focus on outcomes. Journal of General Internal Medicine, 25(6), 593–600.
Alexander, J. A., & Bae, D. (2012). Does the patient-centred medical home work? A critical synthesis of research on patient-centred medical homes and patient-related outcomes. Health Services Management Research, 25(2), 51–59.
Roby, D. H., Pourat, N., Pirritano, M. J., Vrungos, S. M., Dajee, H., Castillo, D., et al. (2010). Impact of patient-centered medical home assignment on emergency room visits among uninsured patients in a county health system. Medical Care Research and Review, 67(4), 412–430.
Diedhiou, A., Probst, J. C., Hardin, J. W., Martin, A. B., & Xirasagar, S. (2010). Relationship between presence of a reported medical home and emergency department use among children with asthma. Medical Care Research and Review, 67(4), 450–475.
Jaen, C. R., Ferrer, R. L., Miller, W. L., Palmer, R. F., Wood, R., Davila, M., et al. (2010). Patient outcomes at 26 months in the patient-centered medical home National Demonstration Project. Annals of Family Medicine, 8(Suppl 1), S57–67; S92.
Cooley, W. C., McAllister, J. W., Sherrieb, K., & Kuhlthau, K. (2009). Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics, 124(1), 358–364.
Strickland, B. B., Singh, G. K., Kogan, M. D., Mann, M. Y., van Dyck, P. C., & Newacheck, P. W. (2009). Access to the medical home: New findings from the 2005–2006 National Survey of Children with Special Health Care Needs. Pediatrics, 123(6), e996–e1004.
Singh, G. K., Strickland, B. B., Ghandour, R. M., & van Dyck, P. C. (2009). Geographic disparities in access to the medical home among US CSHCN. Pediatrics, 124(Suppl 4), S352–S360.
Raphael, J. L., Guadagnolo, B. A., Beal, A. C., & Giardino, A. P. (2009). Racial and ethnic disparities in indicators of a primary care medical home for children. Academic Pediatric, 9(4), 221–227.
Belue, R., Degboe, A. N., Miranda, P. Y., & Francis, L. A. (2012). Do medical homes reduce disparities in receipt of preventive services between children living in immigrant and non-immigrant families? Journal of Immigrant and Minority Health, 14(4), 617–625.
Brousseau, D. C., Owens, P. L., Mosso, A. L., Panepinto, J. A., & Steiner, C. A. (2010). Acute care utilization and rehospitalizations for sickle cell disease. JAMA, 303(13), 1288–1294.
Amendah, D. D., Mvundura, M., Kavanagh, P. L., Sprinz, P. G., & Grosse, S. D. (2010). Sickle cell disease-related pediatric medical expenditures in the U.S. American Journal of Preventive Medicine, 38(4 Suppl), S550–S556.
Royal, C. D., Jonassaint, C. R., Jonassaint, J. C., & De Castro, L. M. (2011). Living with sickle cell disease: Traversing ‘race’ and identity. Ethnicity & Health, 16(4–5), 389–404.
Wegner, S. E., Lathren, C. R., Humble, C. G., Mayer, M. L., Feaganes, J., & Stiles, A. D. (2008). A medical home for children with insulin-dependent diabetes: Comanagement by primary and subspecialty physicians—convergence and divergence of opinions. Pediatrics, 122(2), e383–e387.
Kirschner, N., & Barr, M. S. (2010). Specialists/subspecialists and the patient-centered medical home. Chest, 137(1), 200–204.
Yee, H. F., Jr. (2011). The patient-centered medical home neighbor: A subspecialty physician’s view. Annals of Internal Medicine, 154(1), 63–64.
Raphael, J. L., Rattler, T. L., Kowalkowski, M. A., Mueller, B. U., & Giordano, T. P. (2013). The medical home experience among children with sickle cell disease. Pediatr Blood Cancer, 60(2), 275–280.
Raphael, J. L., Rattler, T. L., Kowalkowski, M. A., Brousseau, D. C., Mueller, B. U., & Giordano, T. P. (2013). Association of care in a medical home and health care utilization among children with sickle cell disease. Journal of the National Medical Association, 105(2), 157–165.
Strickland, B., McPherson, M., Weissman, G., van Dyck, P., Huang, Z. J., & Newacheck, P. (2004). Access to the medical home: Results of the National Survey of Children with Special Health Care Needs. Pediatrics, 113(5 Suppl), 1485–1492.
American Academy of Pediatrics Medical Home Initiatives for Children With Special Needs Project Advisory Committee. (2004). Policy statement: organizational principles to guide and define the child health care system and/or improve the health of all children. Pediatrics, 113(5 Suppl), 1545–1547.
Cooley, W. C., McAllister, J. W., Sherrieb, K., & Clark, R. E. (2003). The Medical Home Index: Development and validation of a new practice-level measure of implementation of the Medical Home model. Ambulatory Pediatrics, 3(4), 173–180.
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We would like to thank Dr. Helen Binns for her valuable assistance with this project and manuscript.
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Liem, R.I., O’Suoji, C., Kingsberry, P.S. et al. Access to Patient-Centered Medical Homes in Children with Sickle Cell Disease. Matern Child Health J 18, 1854–1862 (2014). https://doi.org/10.1007/s10995-013-1429-0
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DOI: https://doi.org/10.1007/s10995-013-1429-0