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Disparities in Quality and Access to Care for Children with Developmental Disabilities and Multiple Health Conditions

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Abstract

Background

The Maternal Child Health Bureau identified six indicators of quality and accessibility essential in achieving coordinated, family-centered, community-based care for children with special healthcare needs (CSHCN). Previous research examined associations between children with single conditions and individual indicators. We sought to identify disparities in meeting quality and accessibility indicators for children with different condition types.

Methods

The 2009–2010 National Survey of CSHCN is a nationally representative cross-sectional study with caregiver’s reports on 40,242 children (0–17 years). Children were categorized into one of seven conditions groups: physical health (PHC), mental health (MHC), developmental disability (DD), physical and mental (PHC and MHC), physical and developmental (PHC and DD), mental and developmental (MHC and DD) and physical, mental and developmental (PHC, MHC, and DD). Unadjusted and adjusted analyses determined associations between condition group and quality and access indicators.

Results

Children with DD, alone or in combination with another condition, were significantly less likely to meet each indicator (p < 0.01) after adjusting for individual demographic, child’s activity limitations and family-related characteristics. Compared with children with PHC, those with all three conditions (PHC, MHC, and DD) had the lowest odds of access to medical home (61 % decreased odds (DO)), community services (67 % DO), and adequate insurance (26 % DO); MHC and DD had the lowest odds of partnering in decision making (51 % DO); DD had the lowest odds of healthcare transition service (66 % DO).

Conclusions

Children with DD and multiple conditions experience disparities in quality and access to healthcare services, meeting most indictors half as often as other CSHCN.

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References

  • Beal, A. C., Dougherty, D., Jorsling, T., Kam, J., Perrin, J., & Palmer, R. H. (2004). Quality measures for children’s health care. Pediatrics, 113(Supplement 1), 199–209.

    PubMed  Google Scholar 

  • Busch, S. H., & Barry, C. L. (2009). Does private insurance adequately protect families of children with mental health disorders? Pediatrics, 124(Supplement 4), S399–S406.

    Article  PubMed  PubMed Central  Google Scholar 

  • Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013). Disparities in transition planning for youth with autism spectrum disorder. Pediatrics, 131(3), 447–454.

    Article  PubMed  Google Scholar 

  • Chen, A. Y., Schrager, S. M., & Mangione-Smith, R. (2012). Quality measures for primary care of complex pediatric patients. Pediatrics, 129(3), 433–445.

    Article  PubMed  Google Scholar 

  • Child and Adolescent Health Measurement Initiative. (2012). National profile of children with special health care needs and autism specrum disorders: Key findings from the 2009/10 NS-CSHCN and 2007 NSCH. Retrieved from www.childhealthdata.org.

  • Chiri, G., & Warfield, M. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081–1091. doi:10.1007/s10995-011-0833-6.

    Article  PubMed  Google Scholar 

  • Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., et al. (2011). Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538.

    Article  PubMed  PubMed Central  Google Scholar 

  • Coller, R. J., Nelson, B. B., Sklansky, D. J., Saenz, A. A., Klitzner, T. S., Lerner, C. F., & Chung, P. J. (2014). Preventing hospitalizations in children with medical complexity: A systematic review. Pediatrics, 134(6), 1–20.

    Article  Google Scholar 

  • DuPaul, G. J., Carson, K. M., & Fu, Q. (2013). Medical home care for children with special needs: Access to services and family burden. Children’s Health Care, 42(1), 27–44.

    Article  Google Scholar 

  • Fedele, D. A., Molzon, E. S., Eddington, A. R., Hullmann, S. E., Mullins, L. L., & Gillaspy, S. G. (2014). Perceived barriers to care in a pediatric medical home the moderating role of caregiver minority status. Clinical Pediatrics, 53(4), 351–355.

    Article  PubMed  Google Scholar 

  • Halfon, N., Houtrow, A., Larson, K., & Newacheck, P. W. (2012). The changing landscape of disability in childhood. The Future of Children, 22(1), 13–42.

    Article  PubMed  Google Scholar 

  • Halfon, N., Larson, K., Lu, M., Tullis, E., & Russ, S. (2014). Lifecourse health development: Past, present and future. Maternal and Child Health Journal, 18(2), 344–365. doi:10.1007/s10995-013-1346-2.

    Article  PubMed  Google Scholar 

  • Houtrow, A. J., Okumura, M. J., Hilton, J. F., & Rehm, R. S. (2011). Profiling health and health-related services for children with special health care needs with and without disabilities. Academic Pediatrics, 11(6), 508–516.

    Article  PubMed  PubMed Central  Google Scholar 

  • Jobe, J. B., White, A. A., Kelley, C. L., Mingay, D. J., Sanchez, M. J., & Loftus, E. F. (1990). Recall strategies and memory for health-care visits. The Milbank Quarterly, 68(2), 171–189. doi:10.2307/3350095.

    Article  CAS  PubMed  Google Scholar 

  • Kenney, M. K., & Mann, M. (2013). Assessing systems of care for US children with epilepsy/seizure disorder. Epilepsy Research and Treatment. doi:10.1155/2013/825824.

    PubMed  PubMed Central  Google Scholar 

  • Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005 2006. Pediatrics, 122, e1149–e1158.

    Article  PubMed  Google Scholar 

  • Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339.

    Article  PubMed  Google Scholar 

  • Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., et al. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20(4), 245–252.

    Article  PubMed  Google Scholar 

  • Litt, J. S., & McCormick, M. C. (2015). Care coordination, the family-centered medical home, and functional disability among children with special health care needs. Academic Pediatrics, 15(2), 185–190.

    Article  PubMed  Google Scholar 

  • Lollar, D. J., Hartzell, M. S., & Evans, M. A. (2012). Functional difficulties and health conditions among children with special health needs. Pediatrics,. doi:10.1542/peds.2011-0780.

    PubMed  Google Scholar 

  • Maternal and Child Health Bureau. (2008). The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. Rockville, MD..

  • McGrath, R. J., Laflamme, D. J., Schwartz, A. P., Stransky, M., & Moeschler, J. B. (2009). Access to genetic counseling for children with autism, Down syndrome, and intellectual disabilities. Pediatrics, 124(Suppl 4), S443–S449.

    Article  PubMed  Google Scholar 

  • Montes, G., Halterman, J. S., & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124(Supplement 4), S407–S413.

    Article  PubMed  Google Scholar 

  • Nageswaran, S., Parish, S. L., Rose, R. A., & Grady, M. D. (2011). Do children with developmental disabilities and mental health conditions have greater difficulty using health services than children with physical disorders? Maternal Child Health Journal, 15, 634–641.

    Article  PubMed  Google Scholar 

  • Nageswaran, S., Silver, E. J., & Stein, R. E. (2008). Association of functional limitation with health care needs and experiences of children with special health care needs. Pediatrics, 121(5), 994–1001.

    Article  PubMed  Google Scholar 

  • Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 159(1), 10–17.

    Article  PubMed  Google Scholar 

  • Park, M. J., Adams, S. H., & Irwin, C. E. (2011). Health care services and the transition to young adulthood: challenges and opportunities. Academic Pediatrics, 11(2), 115–122.

    Article  PubMed  Google Scholar 

  • Porterfield, S. L., & DeRigne, L. (2011). Medical home and out-of-pocket medical costs for children with special health care needs. Pediatrics, 128(5), 892–900.

    Article  PubMed  Google Scholar 

  • Raphael, J. L., Mei, M., Brousseau, D. C., & Giordano, T. P. (2011). Associations between quality of primary care and health care use among children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 165(5), 399–404. doi:10.1001/archpediatrics.2011.33.

    Article  PubMed  Google Scholar 

  • Strickland, B. B., Jones, J. R., Newacheck, P. W., Bethell, C. D., Blumberg, S. J., & Kogan, M. D. (2014). Assessing systems quality in a changing health care environment: The 2009-10 National Survey of Children with Special Health Care Needs. Maternal and Child Health Journal,. doi:10.1007/s10995-014-1517-9.

    Google Scholar 

  • Strickland, B. B., van Dyck, P. C., Kogan, M. D., Lauver, C., Blumberg, S. J., Bethell, C. D., et al. (2011). Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach. American Journal of Public Health, 101(2), 224–231. doi:10.2105/AJPH.2009.177915.

    Article  PubMed  PubMed Central  Google Scholar 

  • van Dyck, P. C., McPherson, M., Strickland, B. B., Nesseler, K., Blumberg, S. J., Cynamon, M. L., et al. (2002). The national survey of children with special health care needs. Ambulatory Pediatrics, 2(1), 29–37.

    Article  PubMed  Google Scholar 

  • Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815–826.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Department of Health Sciences, University of Missouri, 510 Clark Hall, Columbia, MO, 65211, USA

    Nancy C. Cheak-Zamora & Matthew Thullen

Authors
  1. Nancy C. Cheak-Zamora
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  2. Matthew Thullen
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Correspondence to Nancy C. Cheak-Zamora.

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The authors declare that they have no conflict of interest.

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Cheak-Zamora, N.C., Thullen, M. Disparities in Quality and Access to Care for Children with Developmental Disabilities and Multiple Health Conditions. Matern Child Health J 21, 36–44 (2017). https://doi.org/10.1007/s10995-016-2091-0

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  • DOI: https://doi.org/10.1007/s10995-016-2091-0

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