Open Access Open Badges Research article

Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

Eyal Cohen123*, Ashley Lacombe-Duncan1, Karen Spalding4, Jennifer MacInnis1, David Nicholas5, Unni G Narayanan169, Michelle Gordon7, Ivor Margolis8 and Jeremy N Friedman1

Author Affiliations

1 Department of Paediatrics, The Hospital for Sick Children, University of Toronto, 555 University Avenue, Toronto M5G 1X8, ON, Canada

2 Institute of Health Policy, Management & Evaluation, University of Toronto, 155 College Street, Suite 425, Toronto M5T 3M6, ON, Canada

3 CanChild Centre for Childhood Disability Research, McMaster University, 1400 Main Street West, Room 408, Hamilton, L8S 1C7, ON, Canada

4 Daphne Cockwell School of Nursing, Ryerson University, 350 Victoria Street, Toronto, M5B 2K3, ON, Canada

5 Faculty of Social Work, University of Calgary, 2500 University Drive NW, Calgary, T2N 1N4, AB, Canada

6 Department of Orthopedic Surgery, The Hospital for Sick Children, University of Toronto, 555 University Avenue, Toronto, M5G 1X8, ON, Canada

7 Soldiers Memorial Hospital, 170 Colborne Street West, Orillia, L3V 2Z3, ON, Canada

8 Brampton Civic Hospital, 150 Central Park Drive, Brampton, L6T 2T9, ON, Canada

9 Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, M4G 1R8, ON, Canada

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BMC Health Services Research 2012, 12:366  doi:10.1186/1472-6963-12-366

Published: 23 October 2012



Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center.


A before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians.


Total health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit.


Complex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.

Complex care; Care coordination; Special needs; Integration