Norman Saunders Complex Care Initiative
Community-Wide Model of Care Allied Health Team
Research ProjectsResearch Support PhysiciansPublications
Complex Care Program
Imagine caring for a child who has eight different medical problems; is treated by eight distinct sub-specialists, requires home care, has school issues and falls sick continuously. For parents and caregivers of children with medically complex conditions, this is life. These children are a diverse group with diagnostic conditions that are individually rare but collectively relatively common.
Children with Complex Health Needs (CCHN) are a vulnerable and growing group of children who have multiple health needs, requiring multiple services from multiple sectors in multiple locations. Care coordination for this population of children is challenging and if not optimized can lead to poor child- and family-centred health outcomes.
The Saunders Complex Care Initiative is in memory of the beloved SickKids paediatrician, Dr. Norman Saunders, and introduces a new model of care for these patients. This program does not focus on one particular disease but the consequences of many. The initiative will define who falls into the category of complex care, what families need in order to cope and how services can best be delivered. The Initiative team will treat families in this new model of care and conduct research to improve the lives of the children and families with medically complex conditions.
A Community-Wide Model of Care
The innovations being introduced at SickKids are geared toward family empowerment and include:
A Complex Care Team: This is a new development on the in-patient ward. When a child comes in to the Hospital with complex needs (requiring multiple different medications, or needing care by multiple different services, for example), this special team, run by a nurse practitioner and a physician experienced in the delivery of complex care, provides continuity of care for that child.
A Written Care Plan: When the child is ready to go home, the family meets with a nurse practitioner to review their needs and multiple sub-specialists they will need to keep in contact with. This is all summarized as a ‘care plan,’ an electronic and written document that functions as a ‘medical passport’ for the child, so that all health-care practitioners involved in the child’s care are kept ‘in the loop’ of what the child needs.
Community Alliances: We have developed an alliance with the Community Care Access Centres (CCAC), community physicians and community hospitals to ensure that families are getting the services they require and deserve in their home and in their community.
Virtual Outpatient Care: The virtual clinic makes complex care team members accessible to health-care providers and parents outside the Hospital setting should they be needed. Families can communicate with clinicians in a form that meets their needs (e.g. clinic visits, phone and/or email), and get rapid answers to their questions and concerns. This program helps ensure continuity in treatment, prevents crises and reduces the need for hospitalization and emergency room visits.
Heath-Care Coordination Plan: Working with the other health-care providers in the Hospital and the community, we help develop a coordination plan. According to this model, SickKids would be a hub to peripheral hospitals and community health-care workers. Our goal is to ensure families can receive excellent care locally, and be spared the disruption, expense, and inconvenience of frequent visits to SickKids.
Awards
1.Ontario Minister of Health's Award of Excellence at the Celebrating Innovation Expo (2010)
2. Leading Practices, Accreditation Canada (2010)
Research Projects
A Complex Care Clinic in a Tertiary Care Academic Health Sciences Centre (AHSC)
Parents of children with special health-care needs were asked to participate in this study to assess the potential benefits of the new SickKids clinic dedicated to coordinating care for these children. Parents participated prior to discharge or shortly thereafter by completing a variety of questionnaires assessing a variety of child, family and health-system outcomes.
Principal Investigator(s): Eyal Cohen
Collaborative Community-Based Complex Care Coordination
This study will evaluate a newly developed targeted intervention developed by Dr. Norman Saunders. It is aimed at providing integrated community-based care coordination in collaboration with a tertiary care children’s hospital. This proposed model of care will be conducted as a partnership between a large tertiary care children’s hospital, SickKids, and two regional centres: William Osler Health Centre (WOHC) and Soldiers’ Memorial Hospital (SMH). Comparisons will be made before and after the intervention focusing on the effectiveness and efficiency of this intervention for a variety of outcomes including child, parent and family well-being, and the efficiency of health-care delivery to these children. One key outcome being examined is how the “family-centred care” provided to families is working. This is the kind of care where all treatment decisions are made as an alliance between health-care providers and the family. It looks at child health from the perspective not just of the child, but of the child within the family. Families who receive this kind of engagement in their child’s care are more likely to comply with treatments, come back for follow-up treatments and have less frustration, which ultimately can lead to better health for the child and family.
Principal Investigator(s): Eyal Cohen
Anti-reflux procedures after gastrostomy in children with neurologic impairment: a nested case-control study
Children with severe neurologic impairment often have swallowing dysfunction and gastroesophageal reflux disease that leads to failure to thrive and aspiration pneumonia. Tube feeding is recommended as part of nutritional rehabilitation and may also reduce the risk of aspiration related pulmonary disease. Approximately one third of children with neurologic impairment and tube feeding will experience feeding intolerance which is related to gastroesophageal reflux disease. Gastroesophageal reflux disease and feeding intolerance may result in inadequate delivery of nutrition and failure to thrive, esophagitis and pulmonary aspiration. However, there has been inadequate study of what factors are associated with the development of feeding intolerance after initiation of tube feeding and the subsequent need for an anti-reflux procedure in this population of children. Accurately identifying children who will require an anti-reflux procedure would enable implementation of the most appropriate management strategies. Furthermore, knowledge of what factors are associated with a higher risk of developing feeding intolerance and requiring an anti-reflux procedure would allow for better counseling of families at the time of initiation of tube feeding. The objective of this study is to identify factors associated with the need for an anti-reflux procedure in the first year after gastrostomy tube insertion in children with neurologic impairment.
Principal Investigator(s): Sanjay Mahant
Written Care Plan Evaluation Study
Sherri Adams, Nurse Practitioner, is working on a proposal to evaluate one portion of the model: the written care plan. These documents are vital to help families navigate through the health-care system. But we need to understand how these care plans need to be put together. What is an optimal written care plan? What should be in it, what shouldn’t be in it? Who should be writing the care plan – the family, the health-care provider or both? Should there be different versions of it for different settings (e.g. school, emergency department, primary care physician)?
Principal Investigator: Sherri Adams
Regional Migration Patterns of Families of Children with Complex Chronic Conditions
The effects of chronic complex childhood disease on the family unit are pervasive and include increased financial pressures and enormous stress, particularly for families that live far from specialized care. To date, there are no studies that have examined whether families of children with Complex Chronic Conditions (CCC) move to alleviate the financial strain of caring for a child with a CCCs and whether some families move to be closer to specialized care. This study will use health administrative data from the entire province of Ontario over a five-year period in order to determine if families of children with CCCs are more likely to migrate in the first five years of the child’s life compared with families of children with: (1) chronic conditions that do not need complex care (asthma); (2) complex conditions that are not chronic (very low birthweight infants); and (3) healthy children. Further, we will examine whether those families of children with CCC who migrate are more likely to move to a poorer neighbourhood or closer to a tertiary care hospital compared with the other groups.
Principal Investigators: Astrid Guttmann, Eyal Cohen
Norman Saunders Complex Care Initiative - Research Grant Competition
The Norman Saunders Complex Care Initiative research grant competition is a fund established through SickKids Foundation by friends, family and patients of the late Dr. Norman Saunders. The purpose of this grant competition is to provide seed money to researchers in the Department of Paediatrics to give them the opportunity to pursue ideas that are currently outside the targeted areas of conventional funding agencies.
The Grant Review Committee was given a tough assignment to select the winners from the 10 excellent grants submitted. The successful grants for 2009/10 are:
1. The MASC (Medical and Social Complexity) Screening Tool Derivation Study. Phase I – Tool Construction and Pilot-testing. Principal Investigator: Dr. Jonathon Maguire, St Michael's Hospital and Associate Staff, Division of Paediatric Medicine.
As hospitalized children are becoming increasingly medically complex, they are also becoming increasingly socially complex. Socially complex hospitalized children present a unique challenge to health care where failure to identify social risk interferes with the ability of medical teams to effectively manage these children and precludes access to the myriad of hospital and community services designed to ameliorate these challenges. The overall objective of this 5 phase initiative is to develop the MASC tool - a brief, reliable and well validated parent administered screening tool to identify social risk as defined by a detailed social work assessment in children hospitalized on the Pediatric Medicine Inpatient Unit at the Hospital for Sick Children. The proposed project is for completion of Phase 1 – MASC survey creation and pilot testing. This will be accomplished through a 7 step process including a systematic literature search to identify existing tools and their critical review, development of a social risk construct for this unique population using a structured expert panel approach, composition of a draft MASC survey with pilot testing for readability, statistical power and reliability using prospective data generated from parents of 130 hospitalized pediatric medicine inpatients. Ultimately, the MASC tool may improve the ability of health care teams to identify hospitalized children with complex social needs, enhance the quality of their health care and lead to improved health outcomes.
2. Parental Perception of Forgoing Artificial Nutrition and Hydration During End-of-life Care for their Children. Principal Investigator: Dr. Adam Rapoport, Temmy Lettner Centre, Mount Sinai Hospital and Associate Staff, Division of Paediatric Medicine.
Children with multiple and complex health issues receive specialized care to enhance their quality of life. Despite best efforts, many of these children face early death. Artificially delivered nutrition and hydration (ANH), a treatment sometimes given to children who have trouble swallowing safely or who cannot take in enough sustenance by mouth, is fairly common in these children. Nutrition and fluids can be provided directly into the bloodstream or the gut. While this treatment can keep a child alive, there may be complications that have a negative impact on the child’s quality of life. Occasionally, the best option may be to not give ANH and allow for a natural death. Little is written about what happens when ANH is withheld or withdrawn, or how choosing this option affects parents. This study will investigate the experiences of bereaved parents who chose to withhold or withdraw ANH from their child during end-of-life care, including parents’ perceptions of their child’s quality of death. Study results will be useful to parents who will face the option of withholding or withdrawing ANH from their child in the future, as well as to their health care providers. Having knowledge about the experiences of parents in a similar situation will contribute to improved joint discussion and decision making.
3. Songs of Children Said to be Silent. Principal Investigator: Dr. Patricia McKeever, Senior Scientist, Participation Theme, Bloorview Research Institute, Adjunct Scientist, SickKids Research Institute.
In this study, we provide caregivers with a way to hear children with complex continuing care needs who cannot physically or verbally express themselves and who may or may not be conscious. Noninvasive sensors will capture children’s physiological signals and translate them into gentle music. After caregivers have listened to children’s bio-songs, they will be asked their opinions about them. We predict that bio-songs will be an effective way to enhance caregivers’ relationships with silent children. This study may provide the groundwork for a revolutionary approach to improve the quality of life of profoundly disabled children and their caregivers. It will provide unique information about how caregivers perceive these children and what it is like to care for and relate to them. It will provide a way for silent children to be heard by others. It may offer a way to comfort family members and reduce child neglect and parental abandonment.
For further information call Daffodil Morrison, Division of Paediatric Medicine, at 416-813-7769.
Staff Profiles
Most of our team members are members of the Division of Paediatric Medicine. Although not officially assigned to complex care, the majority of our team members volunteer their efforts to improve the care of children with complex health needs. Our team includes physicians, nurses, social workers and researchers. We are all dedicated to improving patients’ and families’ care through our clinic and research endeavors.
Physicians
Dr. Carolyn Beck
Dr. Stacey Bernstein
Dr. Catherine Birken
Dr. Zia Bismilla
Dr. Trey Coffey
Dr. Eyal Cohen
Dr. Jeremy Friedman
Dr. Sanjay Mahant
Dr. Adam Rapoport
Dr. Michael Weinstein
Nurses
Sherri Adams
Julie Gardner, Nurse, Paediatric Consultation Clinic
Joanna Soscia, NP Complex Care
Kim Milbury, NP Complex Care
Allied Health Team
Sabrina Boodhan, Clinical Pharmacist
Karen Kuperberg, Clinical Dietician
Sherna Marcus, Occupational Therapist
Carly Mutch, Occupational Therapist
Sejal Patel-Modi, Physiotherapist
Jennifer Poh, Staff Pharmacist
Valerie Renn, Clinical Dietician
Menaka Thevathasan, Physiotherapist
Jim Tjon, Staff Pharmacist
Social Workers
Barb Malec
Kathy Netten
Research Support Staff
Jennifer MacInnis, Clinical Research Project Coordinator (Complex Care Program)
Inam Elahi, Clinical Research Volunteer (Complex Care Program)
Selected Publications
Cohen E, Agrawal R, Berry JG. Bhagat SKM, Kuo DZ, Simon TD, Srivastava R: Improving the quality of care for children with medical complexity: A clinical and research agenda. Pediatrics 2011: 127: pp 529-38.
Berry JG, Agrawal R, Kuo D, Cohen E, Risko W, Hall M, Srivastava R: Characteristics of hospitalizations for patients who utilize a structured clinical-care program for children with medical complexity. Journal of Pediatrics 2011: 159: pp 284-290.
Cohen E, Jovcevska V, Kuo DZ, Mahant S: Hospital-based comprehensive care programs for Children with Special Health Care Needs (CSHCN): A systematic review. Archives of Pediatrics and Adolescent Medicine 2011: 165: pp 1-9.
Cohen E, Bruce-Barrett C, Kingsnorth S, Keilty K, Cooper A, Daub S: The Integrated Complex Care Model (ICCM): Lessons learned from inter-organizational partnership. Healthcare Q 2011: 14: pp 64-70.
Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH: A national profile of caregiver challenges of more-complex children with special health care needs. Archives of Pediatrics and Adolescent Medicine 2011: 165 (11): pp 1-7.
Mahant S, Pastor AC, DeOliveira L, Nocholas DB, Langer JC: Well-Being of Children With Neurologic Impairment After Fundoplication and Gastrojejunostomy Tube Feeding. Pediatrics; originally published online July 18, 2011; DOI: 10.1542/peds.2010-1253.
Mahant S, Jovcevska, Cohen E: Decision-Making Around Gastrostomy-Feeding in Children With Neurologic Disabilities. Pediatrics 2011; 127;e1471; originally published online May 29, 2011; DOI: 10.1542/peds.2010-3007.
Cohen E, Friedman JN, Mahant S, Adams S, Jovcevska V, Rosenbaum P. The impact of a complex care clinic in a children's hospital. Child: Care, Health and Development: DOI:10.1111/j.1365-2214.2009.01069x 2010.
Cohen E, Goldman RD, Ragone A, Uleryk E, Atenafu EG, Sidiqui U, Mahmoud N, Parkin PC. Child versus adult randomized controlled trials: A citation analysis of trends, 1985-2005. Archives of Pediatrics and Adolescent Medicine 2010: 164 (3): pp 283-288.
Adams S, Cohen E, Mahant S, Friedman J, Rosenbaum P. The needs of medically complex and fragile children and their parents. The Journal of Pediatric Health 2009 23(5), e31-e32.
Mahant S, Friedman JN, Connolly B, Goia C, Macarthur C. Tube feeding and quality of life in children with severe neurologic impairment. Archives of Disease in Childhood 2009: 9: pp 668-73.
Wang C, Guttmann A, To T, Dick P. Neighborhood Income and Health Outcomes in Infants: How Do Those With Complex Chronic Conditions Fare? Arch Pediatr Adolesc Med. 2009: 163(7): 608-615.
Adams SL, Mahant S, Cohen E. Comprehensive Care for Medically Complex Children: The Pediatric Nurse Practitioner - Pediatric Hospitalist Model of Collaborative Care. Hospital Pediatrics 2009: Winter: pp 20-22.
Books and Book Chapters
Watson, J. (2010) Developmental Disabilities. In Nettina, S. (ed) Lippincott Manual of Nursing, 3rd edn. Lippincott: Philadelphia pp 1015-1029.
Adams S: Caring for a child with a chronic illness. In: The Toddler Care Book (Friedman J, ed). Robert Rose Inc., Toronto. 2009: pp 415-420.
Adams SL, Mahant S: Introduction to the medically complex child. In: Comprehensive Pediatric Hospital Medicine (Zaoutis LB, Chiang VW, eds.). Elsevier Inc, Philadelphia, 2007.
Friedman JN: Technologic devices in the medically complex child. In: Comprehensive Pediatric Hospital Medicine (Zaoutis LB, Chiang VW, eds.). Elsevier Science, Philadelphia, 2007.
Links
CanChild
Canadian Association of Paediatric Health Sciences Centres
Agency for Health Related Quality Patient Safety Network
Family Voices
Academic Pediatric Association Special Interest Groups
Report of the Paediatric Complex Care Coordination Expert Panel 2008
American Academy of Pediatrics National Center of Medical Home Initiatives for Children with Special Needs
AboutKidsHealth News: Meeting the Needs of Children with Chronic and Complex Health Conditions
Teaming Up for Kids Sake
Annual Report 2008-2009 Paediatric Medicine
National Association of Children's Hospitals and Related Institutions
Children's Mental Health Ontario