Understanding the adult outcomes of children with medical complexity
Dr. Sarah Malecki is a General Internal Medicine fellow at the University of Toronto and a 2024 Vanier Scholar. She is currently completing her PhD in the Clinical Epidemiology and Healthcare Research program at the Institute of Health Policy, Management and Evaluation. Her research is supervised by Dr. Eyal Cohen, Pediatrician, Co-Founder of the Complex Care program at the Hospital for Sick Children, and Co-Director of the Edwin S.H. Leong Centre for Healthy Children. She provides a summary of her research, which is supported by a Studentship Award from the Edwin S.H. Leong Centre for Healthy Children.
My work focuses on characterizing the morbidity, mortality, and healthcare resource use of adults with complex pediatric-onset diseases, an emerging population in adult medicine resulting from advances in pediatric care. My academic background in molecular medicine and previous experience as a support worker for youth with developmental disabilities really fueled my interest in this area. In medical school and residency, I studied a model condition – 22q11.2 deletion syndrome. As I learned about the accelerated medical complexity throughout adulthood and the importance of multi-disciplinary care models taking a lifespan approach to care, I wanted to understand outcomes and opportunities to improve care for other similar conditions. I am excited to now broaden my focus to the overall, and growing, population of young adults with pediatric-onset complexity.
I will identify Ontario children with medical complexity (CMC) using health administrative data held at ICES. I plan to apply an updated version of a widely used pediatric algorithm (the Complex Chronic Condition algorithm developed in the US by Chris Feudtner) to identify physical conditions and combine it with existing algorithms to identify serious mental and behavioural conditions, providing a more comprehensive picture of CMC. This cohort will be followed forward into adulthood, using a retrospective cohort design, alongside age and sex-matched comparators. Outcomes of interest include resource use (e.g. healthcare costs), the incidence of serious adult-onset conditions and mortality, with a special focus on cardiovascular conditions given their importance in adult medicine. I will use generalized linear regression and cox proportional hazards modeling to compare patterns over time between CMC and comparator groups. I am also interested in defining clinically relevant subgroups within the CMC population to explore the differences in health trajectories. I am currently working on the dataset creation plan for this project, as I prepare to submit a smaller project looking at a cross-sectional snapshot of pediatric complexity in adult hospital data using the GEMINI hospital data repository. Working with Dr. Cohen has helped me develop a foundational understanding of CMC, including the challenges and successes leading up to transition to adult care. It’s very exciting to be able to work with him, and others on my committee and at The Hospital for Sick Children, to continue the story.
I am very grateful to the Edwin S.H. Leong Centre for Healthy Children for their support of this work. This research will help us understand the long-term impact of an emerging population on the adult healthcare system, including the possibility of accelerated aging –meaning the earlier onset of common adult conditions in these young adults. I hope this work will support development of new models of care to anticipate and manage evolving complexity from transition to adult care onwards. I envision multi-disciplinary "adult complex care teams" that mirror models found in pediatrics.
