What is the Complex Care Program?
The Complex Care Program is a coordinated, comprehensive and collaborative model that is designed to fit each patient’s unique needs.
Complex health needs may include:
- Diagnoses that involve lots of body systems.
- Utilizing multiple services and specialists in different locations such as the hospital, home, or school.
- Taking many different medications.
- Often relying on medical technology (such as feeding tube or oxygen) in day to day living.
- Frequently visiting the emergency department or being admitted to hospital.
What we do
The Complex Care Program provides centralized, full-service care, closer to home. We have multiple Complex Care clinic sites that will help oversee your child’s health care needs and partner with you and any health care provider involved in your child’s care.
We are part of the Provincial Council for Maternal and Child Health Complex Care for Kids Ontario strategy to advance province-wide access to integrated medical care and coordination for children with the most complex chronic health care needs.
Expand each section below to learn more about our services.
We will review your needs and work with your family and your child’s other healthcare teams to create a Complex Care Plan. The plan will include your child’s medical information and can be easily shared with other health care providers involved in your child’s care.
We will help develop short- and long-term health care goals with your family to ensure care plans meet your family’s unique needs.
We will provide your child’s health care providers with their Complex Care Plan. This will help ensure your child’s needs are communicated consistently and your child is getting the right care at the right time. When possible, the Complex Care team can help with organizing tests, procedures, and appointments. You will have access to a Patient Information Coordinator who can assist with this.
We will get to know your child and family and will provide support throughout your child’s health care journey.
We will help your family make informed decisions about treatments and plans of care.
We will be there when you need us. Call or email the Paediatric Nurse Practitioner in between visits for any questions or concerns about your child’s health. A Nurse Practitioner is available Monday to Friday during regular business hours.
The SickKids inpatient Clinical Nurse Specialists will collaborate and communicate with the team taking care of your child as well the Nurse Practitioner and Complex Care Physician.
The Complex Care Program is made up of a group of staff paediatricians with an expertise in caring for children with medical complexities.
Advanced practice nurses will be the primary point of contact for patients and families who will work with you and your child to identify and address the medical needs along with clinical nurse specialists, social workers, pharmacists, dietitians, occupational therapists, physiotherapists, information coordinators and a clinical director.
- Kate Langrish – Clinical Director
- Dr. Julia Orkin – Medical Director
- Joanna Soscia – Nurse Practitioner and Clinical Practice Lead
Educating the next generation of healthcare professionals
The Complex Care Program benefits from a strong relationship with Canada’s leading post-secondary institution. Below, learn who shares teaching, assisting and lecturing duties at the University of Toronto, plus other valuable instruction roles in the Department of Paediatrics and Lawrence S. Bloomberg Faculty of Nursing, respectively.
Expand the sections below to find a list of our associated educators.
- Dr. Eyal Cohen – U of T Professor – Department of Paediatrics
- Dr. Jeremy Friedman – U of T Professor and Associate Chair (clinical) – Department of Paediatrics
- Dr. Julia Orkin – U of T Assistant Professor – Department of Paediatrics
- Dr. Carolyn Beck – U of T Associate Professor – Department of Paediatrics
- Dr. Stacey Bernstein – U of T Associate Professor – Department of Paediatrics
- Dr. Trey Coffey – U of T Associate Professor – Department of Paediatrics
- Dr. Zia Bismilla – U of T Assistant Professor – Department of Paediatrics
- Dr. Sanjay Mahant – U of T Associate Professor – Department of Paediatric
- Dr. Michael Weinstein – U of T Associate Professor – Department of Paediatrics
- Sherri Adams (NP) – U of T Adjunct Lecturer- Lawrence S. Bloomberg Faculty of Nursing
- Joanna Soscia (NP) – U of T Clinical Adjunct Appointment - Lawrence S. Bloomberg Faculty of Nursing
- Cathy Daniels (NP) – U of T Adjunct Lecturer - Lawrence S. Bloomberg Faculty of Nursing
- Michelle Ho (NP) – U of T Adjunct Lecturer - Lawrence S. Bloomberg Faculty of Nursing
- Katharine Williams – U of T Adjunct Appointee to the Lawrence S. Bloomberg Faculty of Nursing
- Lianne Dulsrud – U of T – Ajdunct Faculty - Lawrence S. Bloomberg Faculty of Nursing
Electives are available for residents and fellows with the focus on learning about holistic care delivery incorporating the bio, psycho, and social domains, during routine scheduled clinic visits, acute care clinic visits, home visits and hospitalizations. For information on electives for residents, please see the University of Toronto's Core Paediatric Residency Program.
The complex care fellowship is under the Division of Paediatric Medicine and fellows can select a clinical focus in complex care through the community paediatric, academic general paediatric and departmental fellowship programs. For information on a fellowship in complex care, please visit the Paediatric Medicine fellowship training program page.
Norman Saunders Complex Care Initiative - Grant Competition
An endowment fund was established by friends and family of the late Dr. Norman Saunders to recognize his contributions to the care of children and their families in his primary care paediatric office as well as at SickKids throughout his distinguished career. The purpose of this endowment, known as the Norman Saunders Complex Care Initiative (NSCCI) is to stimulate and support research and academic discovery related to the clinical care of children with multiple and complex health challenges.
As part of this initiative, beginning in 2007 a sum of $50,000 per year was made available to support research addressing important questions relating to the clinical care of the growing population of complex care patients. This grant competition was open to all faculty affiliated with the University of Toronto and was administered through the Division of Paediatric Medicine in the Department of Paediatrics and the Research Institute at SickKids. See below for a list of previously funded research projects.
In 2018 it was felt that the annual research grant competition should become a national resource to provide a new opportunity for the growing number of clinicians in the field of paediatric complex care across Canada, to apply for funds to support their research and academic projects. Dr. Saunders was a visionary who knew that we could do better in caring for these children with medical complexity and their families. It is in keeping with his wishes that we hope to broaden the impact of funding through his philanthropic NSCCI endowment.
To promote innovative, interdisciplinary research related to the broad area of complex care in children's health. The Norman Saunders Complex Care Initiative fund has designated approximately $100,000 to be used annually to provide clinicians in the field of paediatric complex care in Canada with grant funding to pursue research ideas that are currently not the targeted areas of conventional funding agencies. This money would be used to fund a stand-alone project or may be used as seed money to pursue a pilot project that would then be funded by a larger granting agency. Projects eligible for funding from a disease specific granting agency or industry will not be considered.
- Subject to a competitive review process
- Approximately $100,000 is available per year. Maximum annual budget is $50,000.00.
- Projects requiring more than one year of funding may be considered; however evidence of an application for other external funding will be a requirement if a second year of funding is required.
- The budget must be thoroughly justified as preference will be given to excellent projects with an economical but feasible budget that would allow for more than 2 projects/year to be funded
Grant applications should be focused on children with medical complexity, defined as children who share the following four characteristics:
- presence of one or more complex chronic conditions that are often multisystem and severe
- have a functional limitation that is often significant and impacts their daily lives, often causing the child to be reliant on technology such as feeding tubes and tracheostomies
- high health care utilization, requiring specialized care and services from different providers in multiple sectors
- caregivers identify high health care service needs e.g. care provision in the home and care coordination which can have significant social and financial impacts of the family
Please note: applications that relate to specific patient populations that have a primary underlying diagnosis with firmly established advocacy and support groups and access to other funding sources (e.g. childhood cancer, cystic fibrosis, transplant patients) will not be considered for this competition.
Funding aims to provide more knowledge/awareness/tools to improve care to CC population through projects which relate to a range of relevant domains/activities including:
- Developing/testing/piloting novel models of care e.g. medical home
- Enhancing care coordination
- Defining/measuring/improving outcomes
- Addressing health systems issues
- Quality of life
- Designing/evaluating therapeutic interventions
- Physicians, nurses, allied health professionals, researchers and trainees who are affiliated with an academic health science centre or university in Canada. New and early career investigators are encouraged to apply.
- Research partnership with patients and families, community groups, and/or family advisors is strongly recommended and applications should include a patient and family engagement plan (including a budget where appropriate).
Applicants should submit their applications as follows:
- Submission is electronic only and must be sent as a single PDF file
- The submission should be presented in one PDF file containing (in this order):
- Completed Norman Saunders Complex Care Initiative Grant Application form (PDF)
- Proposal and Appendices (see details below)
- CVs of all applicants/co-applicants (abbreviated version, maximum 5 pages)
- Internal scientific review which may include hospital RI or university review. Please upload reviewers’ comments. (if unable to obtain this then will need to contact us directly to discuss at firstname.lastname@example.org)
- Three single-spaced pages to be submitted electronically. Please do not exceed the page limit - only 3 pages will be evaluated. Use only 8.5" by 11" paper, one side only, single space type no smaller than 12 points, a margin of one inch around the page is needed
- Must include:
- Rationale and objectives, including what is currently known and what the gaps in knowledge are
- Expertise/qualifications of applicants essential for this study
- Research question and research methods (design, measures, analysis)
- Time-line and feasibility
- Impact of study and relevance to the Norman Saunders Complex Care Initiative (see Background, Purpose, Criteria above)
- Potential outcome and plan for knowledge translation and dissemination
- Maximum two pages of references with full titles
- Maximum two figures
- Maximum two reprints, manuscripts, etc. only if absolutely pertinent
- One page budget justification (ineligible expenses: conference travel, standard office equipment, computer hardware, furniture) and personnel involved
- Appropriate ethics protocols (these may follow application)
- Letters of support (if appropriate)
Submit your application
Applications are to be emailed to: email@example.com
Congratulations to the winners of the 2020 grant. Applications for the 2021 grant are not open at this time, please check back in Spring 2021 for further information.
Composition of review committee
Committee of at least seven members which may include:
- Committee Chair (to be decided from amongst the committee members)
- A representative member from the Division of Paediatric Medicine, SickKids
- A senior scientist from the Research Institute, SickKids
- A representative from Holland Bloorview Kids Rehab
- An Allied Health Professional
- A member of Dr. Norman Saunders’ family
- A family/parent representative
- A complex care clinician from outside of Toronto
- Ad hoc reviewers may be invited depending on topics submitted for review
Peer-review process and evaluative criteria
In general, the CIHR peer review process and ranking scales will be followed.
- Each application will be assigned to two-three reviewers for independent assessment
- Each application will be evaluated on:
- clinical relevance to complex care in children’s health,
- scientific merit,
- relevance to the intent of the Norman Saunders Complex Care Initiative
- The scores given by the reviewers will be discussed at the reviewer committee meeting
- A consensus of scores and ranks will be reached; committee members with a conflict of interest with the applicants will be recused from the decision making regarding that grant
- The budget must be thoroughly justified as preference will be given to excellent projects with an economical but feasible budget that would allow for more than two projects/year to be funded
- Results including reviewers’ suggestions/feedback will be provided to applicants
Responsibility and accountability
The following is required of all funded applications:
- Obtain REB approval from institutions involved
- Begin funding within twelve months of receipt of funds
- Submit annual progress report
- Submit final report with a financial statement within six months of project completion
- Return unused or remaining funds
- Be prepared to present findings at a symposium to showcase projects funded by the NSCCI
- Understanding Approaches to Decision-Making among Caregivers of Chidlren with Meidcal Complexity: A Qualitative Study - Kate Nelson (PI), Francine Buchanan, Sanjay Mahant, Tammie Dewan, Sherri Adams, Kimberley Widger, David Nicholas. [Hospital for Sick Children]
- The Role of Family Adaptation in the Transition to Adulthood for Youth With Medical Complexity: A Qualitative Case Study - Lin Li (PI), Patricia Strachan (PI), Nancy Carter, Jan Willem Gorter, Jenny Ploeg, Linda Till, Marcy White. [McMaster University]
- Application of polygenic risk score for predicting bone fragility in children with medical complexity - Fiscaletti M (PI), Manousaki D (PI), Marano M, Bonneau V, Doré-Bergeron MJ. [Sainte Justine University Hospital Center]
- An Essential Subset Of Good Outcome For Complex Care - Nora Fayed (PI), Eyal Cohen, Joan Tranmer, Myla Moretti, Michael Sidra, Esther Lee, Francine Buchanan, Samatha Noyek [HSPRI/Queens]
- A Mixed-Methods Evaluation of the Unique Experiences of Stakeholders from a Satellite Clinic in Northern Ontario for Children with Medical Complexity – Dr. Nathalie Major, Dr. Eyal Cohen, Dr. Julia Orkin and Nora Fayed (PIs) / S Sutherland, D Newhook, J Kenney, N Dussah, H Guerra (Co-Investigators) [Children’s Hospital of Eastern Ontario / Hospital for Sick Children / Queen’s University]
- Digital Health for Complex Care Kids (DigiComp Kids) – A Co-Design and Usability Testing Study – Dr. Nancy Carter, Dr. Marissa Bird (PIs) / A Polanski, A Lim, C Grennan, C Fajardo, E Chambers, R Yates, S Mierdel, S Reaume, M McGillon (Co-Investigators) [McMaster University School of Nursing]
- Patient-reported experiences and outcomes for the care of children with medical complexity and palliative care needs in the ED – Dr. Nathalie Orr Gaucher, Dr. Anne-Josée Côté (PIs) / S Ali, G Thompson, N Kleiber, MF Langlet, A Descoteaux, MA Marquis, A Payot, CJ Bourque, MJ Doré-Bergeron (Co-Investigators) [CHU Sainte-Justine, Université de Montréal and Alberta Children’s Hospital, University of Calgary]
- High Flow Nasal Cannula Therapy for the Management of Obstructive Sleep Apnea in Children with Complex Medical Conditions – Dr. Indra Narang (PI)/ Dr. Reshma Amin/ Dr. Eyal Cohen/ Adele Baker [Hospital for Sick Children]
- Understanding the Relationship between Pain Trajectories and Well-being in Children and Youth with Cerebral Palsy – Dr. Darcy Fehlings (PI)/ Dr. Heather Shearer/ Dr. Pierre Côté/ Dr. Sheilah Hogg-Johnson/ Dr. Patricia McKeever [Holland Bloorview Kids Rehabilitation Hospital]
- Patterns of care in children with CNS static encephalopathy according to location of death: A mixed methods study of parents’ experiences – Dr. Nathalie Orr Gaucher (PI)/ Dr. Niina Kleiber (PI) [Université de Montréal]
- Development of a Conceptual Framework for Quality of Life in Children with Medical Complexity Nearing the End of Life – Kim Widger (PI)/ Dr. Adam Rapoport/ Sherri Adams / Dr. Jurg Streuli / Rose Steele.
- Housing and Health: An Exploration of Housing need in Children with Medical Complexity (CMC) – Dr. Julia Orkin (PI)/ Dr. Eyal Cohen / Joanna Soscia / Kathy Netten / Kara Hounsell
- Paediatric Tracheostomy Care: An evaluation of an innovative competency-based education program for community health care providers – Dr. Reshma Amin (PI)/ Dr. Julia Orkin (PI) / Stephanie Chu / Catharine Walsh / Krista Keilty / Sandra McKay.
- Competence in Complex Care: A Multicenter Randomized Trial of Curricular Modules in the Care of Children with Medial Complexity for Paediatric Residents - Julia Orkin (PI)/ Kathleen Huth/ Sara Long-Gagne.*(Co-funded with a Paediatric Consultants Educational Scholarship Grant)
- Exploring families and Health Care Providers (HCPs) Experiences Using a Cloud-based Care Plan for Children with Medical Complexity (CMC) - Sherri Adams (PI)/ Arti Desai.
- The Experiences of Bereaved Family Caregivers with Advance Care Planning for Children with Medical Complexity - Julia Orkin (PI)/ Sarah Lord/ Reshma Amin.
For details on funded projects from 2015 and earlier, please email Shannon Brass.
Jason Buera, Complex Care
The late Dr. Norman Saunders started The Complex Care Program in March 2006 to help children and families with rare or undiagnosed complex chronic diseases. He recognized that these patients and families faced insurmountable challenges, and the structure of the prevailing system was not serving their needs well.
While each patient had a unique circumstance or underlying disease, together, they had many unifying characteristics – complex, chronic conditions – a reliance on assistance from a technological device like a feeding tube, disability and functional impairment, an endless list of medications, and the need for intensive care co-ordination. Their families were tasked with the challenging duty of keeping it all together so their children could receive care by many different health care providers in many different places over time.
The Complex Care Program provides holistic wrap-around care for children with medical complexity, and their families. Our program leverages partnership with parents and families to provide goal-oriented, clinical care and a medical home for children who are technologically dependent, with multiple medical needs.
Working in collaboration with satellite partners, we have grown to include seven satellite clinics (Michael Garron Hospital, North York General Hospital, Credit Valley Hospital, Orillia Soldier’s Memorial Hospital, Royal Victoria Hospital, Peterborough Regional Health Centre, and Timmins Hospital) and care for over 500 children across the region.
We are a partnership program with Complex Care Kids Ontario, developing standards and clinical pathways for children with medical complexity.