References & Recommended Reading

Last modified by Ann Watkins on 2016/04/01 16:42

  1. Adams, S., Cohen, E., Mahant, S., Friedman, J. N., Macculloch, R., & Nicholas, D. B. (2013). Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study. BMC pediatrics, 13(1), 10. doi:10.1186/1471-2431-13-10
  2. Berry, J., Hall, D., & Kuo, D. (2011). Hospital utilization and characteristics of patients experiencing recurrent readmissions within children’s hospitals. JAMA: the journal of …, 305(7), 682–690. Retrieved from
  3. Jay G. Berry, Matt Hall, John Neff, Denise Goodman, Eyal Cohen, Rishi Agrawal, Dennis Kuo and Chris Feudtner, Children With Medical Complexity And Medicaid: Spending And Cost Savings, Health Affairs, 33, no.12 (2014):2199-2206, doi: 10.1377/hlthaff.2014.0828

  4. Berry JG, Bloom S, Foley S, Palfrey JS. Health inequity in children and youth with chronic health conditions. Pediatrics. 2010;126(Suppl 3):S111–9

  5. Braveman PA. Monitoring equity in health and healthcare: a conceptual framework. J Health Popul Nutr. 2003;21(3):181–92. 

  6. Braveman P, Barclay C. Health disparities beginning in childhood: a life-course perspective. Pediatrics. 2009;124(Suppl 3):S163–75.

  7. Cohen, E.,Berry, J. G., Camacho, X., Anderson, G., Wodchis, W., & Guttmann, A. (2012). Patterns and costs of health care use of children with medical complexity. Pediatrics, 130(6), e1463–70. doi:10.1542/peds.2012-0175

  8. Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–38. doi:10.1542/peds.2010-0910
  9. Cohen, E., & N. Friedman, J. (2012). Caring for Children with Medical Complexity: Definitions, Challenges and Solutions. Current Pediatric Reviews, 8(2), 93–102. doi:10.2174/157339612800681253
  10. Dewan, T, Cohen, E.,(2013)  Children with Medical Complexity in Canada. Paediatr Child Health 2016; 18(10):518-522
  11. J. L. Doig, J. D. McLennan  and L. Urichuk, ‘Jumping through hoops’: parents’ experiences with seeking respite care for children with special needs, Child: care, health and development,  doi:10.1111/j.1365-2214.2008.00922.x

  12. Elias, E. R., & Murphy, N. a. (2012). Home care of children and youth with complex health care needs and technology dependencies. Pediatrics, 129(5), 996–1005. doi:10.1542/peds.2012-0606
  13. Gordon, John B,Colby, Holly H, Bartlet, Tera, Jablonski, Debra, Krauthoefer, Mary, Havens, Peter, A tertiary Care-Primary Care Partnership Model for Medically complex and Fragile Children and Youth With Special Health Care Needs,  Arch Pediatr Adolesc Med. 2007;161(10):937-944
  14. 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 & adolescent medicine, 165(11), 1020–6. doi:10.1001/archpediatrics.2011.172
  15. Dennis Z. Kuo, Anthony Goudie, Eyal Cohen, Amy Houtrow, Rishi Agrawal, Adam C.Carle and Nora Wells,  Inequities In Health Care Needs For Children With Medical Complexity, Health Affairs, 33, no.12 (2014):2190-2198  doi: 10.1377/hlthaff.2014.0273

  16. Law J. , McCann D. & O’May F. (2011) Managing change in the care of children with complex needs: healthcare providers’ perspectives. Journal of Advanced Nursing 67(12), 2551–2560. doi: 10.1111/j.1365-2648.2011.05761.x

  17. Looman, W., Presler, E.,Erickson, M., Garwick, A., Cady, R., Kelly, A., Finkelstein, S., Care Coordination for Children With Complex Special Health Care Needs: The Value of the Advanced Practice  Nurse’s Enhanced Scope of Knowledge and Practice,National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. July/August 2013

  18. Miller, A. R., Condin, C. J., McKellin, W. H., Shaw, N., Klassen, A. F., & Sheps, S. (2009). Continuity of care for children with complex chronic health conditions: parents’ perspectives. BMC health services research, 9, 242. doi:10.1186/1472-6963-9-242
  19. James M. Perrin, MD; Diane Romm, PhD; Sheila R. Bloom, MS; Charles J. Homer, MD, MPH;Karen A. Kuhlthau, PhD; Carl Cooley, MD; Paula Duncan, MD; Richard Roberts, PhD; Phyllis Sloyer, PhD;Nora Wells, MA; Paul Newacheck, DrPH, A Family-Centered, Community-Based System of Services for Children and Youth With Special Health Care Needs, Arch Pediatr Adolesc Med. 2007;161(10):933-936
  20. Ricardo A. Mosquera, MD; Elenir B. C. Avritscher,MD, PhD, BA; Cheryl L. Samuels, RN, PNP; Tomika S. Harris, RN, PNP, DNP;Claudia Pedroza, PhD; Patricia Evans, MD; Fernando Navarro, MD; Susan H.Wootton, MD; Susan Pacheco, MD; Guy Clifton, MD; Shade Moody, MD; Luisa Franzini, PhD; John Zupancic,MD, ScD; Jon E. Tyson, MD, MPH, Effect of an Enhanced Medical Home on Serious Illness and Cost of Care Among High-Risk Children With Chronic Illness A Randomized Clinical Trial, JAMA. 2014;312(24):2640-2648. doi:10.1001/jama.2014.16419
  21. Patient- and Family-Centered Care Coordination:A Framework for Integrating Care for Children and Youth Across Multiple Systems,COUNCIL ON CHILDREN WITH DISABILITIES and MEDICAL HOME IMPLEMENTATION PROJECT ADVISORY COMMITTEEPediatrics 2014;133;e1451; originally published online April 28, 2014;DOI: 10.1542/peds.2014-0318
  22. Rosenbaum, P, Gorter, J. W., The "F-words" in childhood disability: I swear this is how we should think!  2011 Blackwell Publishing Ltd (link to PDF)
  23. Samwell, B. (2012). From hospital to home: journey of a child with complex care needs. Nursing children and young people, 24(9), 14–9. Retrieved from, T. D., Berry, J., Feudtner, C., Stone, B. L., Sheng, X., Bratton, S. L., Dean, J. M., et al. (2010). Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics, 126(4), 647–55. doi:10.1542/peds.2009-3266
  24. Simon, T. D., Mahant, S., & Cohen, E. (2012). Pediatric hospital medicine and children with medical complexity: past, present, and future. Current problems in pediatric and adolescent health care, 42(5), 113–9. doi:10.1016/j.cppeds.2012.01.002
  25. Srivastava, R., Stone, B. L., & Murphy, N. a. (2005). Hospitalist care of the medically complex child. Pediatric clinics of North America, 52(4), 1165–87, x. doi:10.1016/j.pcl.2005.03.007
Created by Lisa Stromquist on 2013/04/16 21:00