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Caring for Children with Special Health Care Needs: Profiling Pediatricians and Their Health Care Resources

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Abstract

Background and Objectives Pediatricians face numerous challenges in providing care for children with special health care needs (CSHCN). Few studies have described health care resources available to support pediatricians to care for CSHCN. This study investigated available resources to care for CSHCN and factors associated with having a greater proportion of CSHCN in practice. Methods We conducted a statewide survey of active members of the American Academy of Pediatrics in California to study pediatric subspecialty care access, community and office resources and practice barriers. We performed a logistic regression model on having an “above average proportion” of CSHCN in practice, adjusting for demographics, practice type (rural vs. suburban/urban) and medical resources, care satisfaction, and ease of subspecialty access. Results Our response rate was 50.2% (n = 1290); 75% of respondents reported providing some primary care services, with many primary care pediatricians caring for a high proportion of CSHCN. Pediatricians reported an average of 28% CSHCN in their practices. Rural pediatricians lacked subspecialty access (10–59% reporting no access to the various subspecialties). Factors relating to higher CSHCN in practice included being in academic medical centers and satisfaction in caring for CSHCN. Conclusions Pediatricians report lack of access to mental health services, care coordination and case management. Academic medical centers and higher physician satisfaction in care delivery for CSHCN are associated with more CSHCN in practice. Promoting ways to support pediatricians, such as practice collaboration with behavioral specialists, may be necessary to encourage primary care pediatricians to provide medical homes for CSHCN.

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Abbreviations

AAP:

American Academy of Pediatrics

CA:

California

CSHCN:

Children with special health care needs

CCS:

California Children’s Services

References

  • Agrawal, R., Shah, P., Zebracki, K., Sanabria, K., Kohrman, C., & Kohrman, A. F. (2012). Barriers to care for children and youth with special health care needs: perceptions of Illinois pediatricians. Clinical Pediatrics, 51(1), 39–45.

    Article  PubMed  Google Scholar 

  • Agrawal, R., Shah, P., Zebracki, K., Sanabria, K., Kohrman, C., & Kohrman, A. F. (2013). The capacity of primary care pediatricians to care for children with special health care needs. Clinical Pediatrics, 52(4), 310–314.

    Article  PubMed  Google Scholar 

  • Berry, J. G., Hall, M., Neff, J., et al. (2014). Children with medical complexity and Medicaid: spending and cost savings. Health Affairs, 33(12), 2199–2206.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bethell, C. D., Read, D., Blumberg, S. J., & Newacheck, P. W. (2008). What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Maternal and Child Health Journal, 12(1), 1–14.

    Article  PubMed  Google Scholar 

  • Boudreau, A. A., Perrin, J. M., Goodman, E., Kurowski, D., Cooley, W. C., & Kuhlthau, K. (2014). Care coordination and unmet specialty care among children with special health care needs. Pediatrics, 133(6), 1046–1053.

    Article  PubMed  Google Scholar 

  • Chamberlain, L. J., Hughes, D. C., Bishop, J. S., Matsuda, D. H., & Sassoubre, L. (2005). Universal health care coverage for children: Impact on pediatric health care providers. Journal of Health Care for the Poor and Underserved, 16(4), 622–633.

    Article  PubMed  Google Scholar 

  • Cooley, W. C., & McAllister, J. W. (2004). Building medical homes: Improvement strategies in primary care for children with special health care needs. Pediatrics, 113(5 Suppl), 1499–1506.

    PubMed  Google Scholar 

  • Cummings, S. M., Savitz, L. A., & Konrad, T. R. (2001). Reported response rates to mailed physician questionnaires. Health Services Research, 35(6), 1347–1355.

    PubMed  PubMed Central  CAS  Google Scholar 

  • Gans, D. B. M., Ramirez, M., Cabezas, L., & Pourat, N. (2013). Assuring children’s access to pediatric subspecialty care in California. Los Angeles, CA: UCLA Center for Health Policy Research.

    Google Scholar 

  • Ghandour, R. M., Hirai, A. H., Blumberg, S. J., Strickland, B. B., & Kogan, M. D. (2014). Financial and nonfinancial burden among families of CSHCN: Changes between 2001 and 2009–2010. Academic Pediatrics, 14(1), 92–100.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hardy, R., Vivier, P., Rivara, F., & Melzer, S. (2013). Montana primary care providers’ access to and satisfaction with pediatric specialists when caring for children with special health care needs. The Journal of Rural Health, 29(2), 224–232.

    Article  PubMed  Google Scholar 

  • Homer, C. J., Klatka, K., Romm, D., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122(4), e922-937.

    Article  Google Scholar 

  • Institute of Medicine (U.S.). (1996). Division of Health Care Services. Committee on the Future of Primary Care., Donaldson MS. Primary care: America’s health in a new era. Washington, DC: National Academy Press.

    Google Scholar 

  • Kuo, D. Z., Cohen, E., Agrawal, R., Berry, J. G., & Casey, P. H. (2011). A national profile of caregiver challenges among more medically complex children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 165(11), 1020–1026.

    Article  PubMed  PubMed Central  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 

  • Marcin, J. P., Ellis, J., Mawis, R., Nagrampa, E., Nesbitt, T. S., & Dimand, R. J. (2004). Using telemedicine to provide pediatric subspecialty care to children with special health care needs in an underserved rural community. Pediatrics, 113(1 Pt 1), 1–6.

    Article  PubMed  Google Scholar 

  • Martin, A. B., Crawford, S., Probst, J. C., et al. (2007). Medical homes for children with special health care needs: A program evaluation. Journal of Health Care for the Poor & Underserved, 18(4), 916–930.

    Article  Google Scholar 

  • McClain, M. R., Cooley, W. C., Keirns, T., & Smith, A. (2014). A survey of the preferences of primary care physicians regarding the comanagement with specialists of children with rare or complex conditions. Clinical Pediatrics, 53(6), 566–570.

    Article  PubMed  Google Scholar 

  • McPherson, M., Arango, P., Fox, H., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140.

    Article  PubMed  CAS  Google Scholar 

  • Miller, J. E., Nugent, C. N., Gaboda, D., & Russell, L. B. (2013). Reasons for unmet need for child and family health services among children with special health care needs with and without medical homes. PLoS ONE, 8(12), e82570.

    Article  PubMed  PubMed Central  CAS  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 

  • Ray, K. N., Bogen, D. L., Bertolet, M., Forrest, C. B., & Mehrotra, A. (2014). Supply and utilization of pediatric subspecialists in the United States. Pediatrics, 133(6), 1061–1069.

    Article  PubMed  Google Scholar 

  • Ray, K. N., Demirci, J. R., Bogen, D. L., Mehrotra, A., & Miller, E. (2015). Optimizing telehealth strategies for subspecialty care: Recommendations from rural pediatricians. Telemedicine and e-Health, 21(8), 622–629.

    Article  PubMed  PubMed Central  Google Scholar 

  • Strickland, B. B., Jones, J. R., Ghandour, R. M., Kogan, M. D., & Newacheck, P. W. (2011). The medical home: Health care access and impact for children and youth in the United States. Pediatrics, 127(4), 604–611.

    Article  PubMed  Google Scholar 

  • Van Cleave, J., Okumura, M. J., Swigonski, N., O’Connor, K. G., Mann, M., & Lail, J. L. (2015). Medical homes for children with special health care needs: Primary care or subspecialty service? Academic Pediatrics, 16(4), 366–372.

    Article  PubMed  Google Scholar 

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Acknowledgements

We thank the American Academy of Pediatrics Department of Membership for providing membership information for AAP members in California. We also thank the AAP Department of Research for sharing AAP Periodic Survey of Fellows practice characteristics questions and data. We thank the AAP-CA Technical Advisory committee, Laurie Soman, Yasuko Fukuda, Mary Doyle, the Lucile Packard Foundation, and the AAP-CA members who participated.

Funding

Funding for this project was from a grant provided by the Lucile Packard Foundation for Child Health.

Author information

Authors and Affiliations

  1. Division of General Pediatrics, University of California, 3333 California Street, STE 245, San Francisco, CA, 94118, USA

    Megumi J. Okumura, Heather A. Knauer & John I. Takayama

  2. Division of General Internal Medicine, University of California, San Francisco, CA, USA

    Megumi J. Okumura

  3. Phillip R. Lee Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, 94118, USA

    Megumi J. Okumura

  4. School of Public Health, University of California, 50 University Hall #7360, Berkeley, CA, 94720-7360, USA

    Heather A. Knauer

  5. American Academy of Pediatrics, California Foundation, American Academy of Pediatrics, 921 11th Street Suite 1100, Sacramento, CA, 95814, USA

    Kris E. Calvin

Authors
  1. Megumi J. Okumura
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  2. Heather A. Knauer
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  3. Kris E. Calvin
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  4. John I. Takayama
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Contributions

MJO, conceptualized and designed the study, designed the data collection instruments, supervised the data collection, carried out the initial analyses, drafted the manuscript and approved the final manuscript as submitted. HK developed the online survey tool, coordinated and supervised data collection, carried out the initial and final analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted. KC conceptualized and designed the study, critically reviewed the manuscript and approved the final manuscript as submitted. JIT conceptualized and assisted in the development of the survey instrument, performed significant input and editing of the manuscript and approved the final manuscript as submitted. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Megumi J. Okumura.

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None of the authors have any Financial Disclosures to disclose. None of the authors have any Conflicts of interest to disclose.

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Okumura, M.J., Knauer, H.A., Calvin, K.E. et al. Caring for Children with Special Health Care Needs: Profiling Pediatricians and Their Health Care Resources. Matern Child Health J 22, 1042–1050 (2018). https://doi.org/10.1007/s10995-018-2484-3

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  • DOI: https://doi.org/10.1007/s10995-018-2484-3

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