Caring for Children and Youth with Medical Complexity: Can we do better?

Last modified by Andrew Tomayer on 2019/03/19 21:12

The vision of the CAPHC Complex Care Community of Practice (CoP) is that all Canadian children/youth with medical complexity and their families are provided with access to tools, supports and services that will enable integrated and coordinated care that is proactive and best suited to each child/youth’s needs and environment.

To help meet that vision the CoP has developed a Guideline for the Management of Children and Youth with Medical Complexity through the Continuum of Care.   This includes six recommendations focused on Identification, Capacity building, Keyworkers, Care Planning, Family Empowerment, and Healthcare Transitions.

We would like to share that Guideline with you and hope that by the end of the presentation you will:

  • Identify the population we are talking about 
  • Understand the issues faced by CMC and their families
  • Understand how the application of specific recommendations can impact at the system, clinical and family levels
  • Appreciate that this field of study is still evolving and requires more study and reliable evaluation

Coming Soon!
CAPHC Guideline for the Management of Children and Youth Through the Continuum of Care

Click here to download the slides from this presentation.

Presentation References:

  1. Berry, Jay G. , MD, MPH, David E. Hall, MD, Dennis Z. Kuo, MD, MHS, Eyal Cohen, MD, MSc, Rishi Agrawal, MD, MPH, Chris Feudtner, MD, PhD, MPH, Matt Hall, PhD, Jacqueline Kueser, MHA, William Kaplan, BS, and John Neff, MD,  Hospital Utilization and Characteristics of Patients Experiencing Recurrent Readmissions within Children’s Hospitals, JAMA. 2011 Feb 16; 305(7): 682–690., doi:  10.1001/jama.2011.122 
  2. Berry Jay G. , MD, MPH, Matt Hall, PhD, David E. Hall, MD, Dennis Z. Kuo, MD, MHS, Eyal Cohen, MD, MSc, Rishi Agrawal, MD, MPH, Kenneth D. Mandl, MD, MPH, Holly Clifton, MPH, and John Neff, MD,  Inpatient Growth and Resource Use in 28 Children’s Hospitals, A Longitudinal, Multi-institutional Study, JAMA Pediatr. 2013 Feb; 167(2): 170–177. doi:  10.1001/jamapediatrics.2013.432
  3. Berry ,Jay G., M.D., M.P.H.1, Matt Hall, Ph.D.2, John M. Neff, M.D.3, Denise M. Goodman, M.D., M.S.4, Eyal Cohen, M.D., M.Sc.5, Rishi Agrawal, M.D., M.P.H.4, Dennis Z. Kuo, M.D., M.H.S.6, and Chris Feudtner, M.D., Ph.D., M.P.H.7, Optimizing Health Services and Spending for Children with Medical Complexity in Medicaid, Health Aff (Millwood). 2014 December ; 33(12): 2199–2206. doi:10.1377/hlthaff.2014.0828
  4. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, et al, Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives. Pediatrics [Internet]. 2011 Mar 1 127(3):529–38. Available from: 
  5. Cohen E, et al, Patterns and Cost of health care use of children with medical complexity. Pediatrics 2012:130:e 1463-70
  6. Dewan T. Cohen E, Children with medical complexity in Canada, Paediatr Child Health 2013;18(10):518-522
  7. Matlow AG, et al, Adverse events among children in Canadian hospitals: The Canadian Pediatric Adverse Event Study. CMAJ 2012;184:709-718
  8. Slonim AD, LaFleur BJ, Ahmed W, Joseph JG. Hospital-reported medical errors in children. Pediatric. 2003 Mar;111(3):617-21.

Angie.jpgAngela Arra- Robar, RN MSN, Clinical Nurse Specialist, Complex/Medically Fragile Children & Youth, IWK Health Centre

Angela Arra-Robar is a Clinical Nurse Specialist with children with medical complexities at the IWK Health Centre in Halifax, Nova Scotia.  Angela is a graduate of the University of Western Sydney (Australia) and Canyon College (USA) where she completed her Masters of Science in Nursing in 2006.

Angela is dedicated to advocating for health system change in order to better meet the evolving needs of children with medical complexities and their families across the lifespan.

DarrenConnolly_002.jpgDarren Connolly,  Family Advisor, Paediatric Family Resource Centre, Children's Hospital London Health Sciences Centre

Darren has worked at LHSC for two years as a family advisor in the Children’s Hospital Paediatric Family Resource Centre, providing information, resources and guidance to patients, families and staff.Darren serves on the Board of Directors at Ontario Agencies Supporting Individuals with Special Needs (OASIS) and serves as the Vice President Volunteer for the organization. His board role includes working with the provincial government and the Ministry of Community and Social Services to address issues relevant to individuals living with disabilities.

Darren is also a Director on the Board of Community Living Elgin, and is a mentor for the Small Business Enterprise Centre in St Thomas, mentoring students and adults with their Summer Company and Starter Company programs. Additionally, Darren’s volunteer work has extended to leading and participating in fundraisers for March of Dimes, Thames Valley Children’s Centre, Easter Seals, and Community Living London.

Headshot_KC.jpgKristen Campbell RN, MN Program Lead, Child and Family, Saint Elizabeth

Kristen is an Advanced Practice Nurse with Saint Elizabeth Health Care.  She is currently Program Lead, Child and Family responsible for the planning and evaluation of this program both at a regional and national level. Kristen champions a continuous quality improvement and person centered approach to care to achieve optimal client care outcomes and improve the client experience. Kristen supports the implementation of professional standards, evidence based practice, and addresses quality and risk issues.  Kristen has participated as Co-Chair of the Complex Care Community of Practice since 2014. 


Nathalie Major MD, FRCPC, Medical Director, Complex Medical Care Service, Assistant Professor of Pediatrics, University of Ottawa

Dr. Major is an Assistant Professor of Pediatrics at the University of Ottawa.  She completed her pediatric training at Queen’s University and the Ottawa University in 1998. She extended her training with a one year Infectious Diseases Fellowship at the Ottawa University in 1999. She has been on the clinical staff of the Children’s Hospital of Eastern Ontario (CHEO) since 1998.
Dr. Major is the Medical Director for the Complex Medical Care Program (CMC) at CHEO.  She is also the Co-Chair for the Community of Practice for Complex Care with the Canadian Association of Pediatric Health Centres. Dr. Major works on national and provincial initiatives advising on integrated care model. Her research interest is on models of care coordination for children with complex chronic conditions.

Created by Lisa Stromquist on 2018/03/14 14:47