Leong Fellow shares the impact of caregiving on mental and physical health

Dr. Christina Belza, a nurse practitioner in the Pediatric Intestinal Failure Program at The Hospital for Sick Children in Toronto and Leong Fellow, provides an update on her postdoctoral research exploring the use of administrative data to evaluate outcomes for children with complex medical needs. She highlights the importance of utilizing large administrative data to understand the need for large scale interventions, in addition to the importance of evaluating the small, rare disease groups to understand individual level impacts.

Early on in my career, I learned that in order to move our field forward we had to partner clinical care with research and evaluation. I learned that partnering clinical care with research and evaluation was the way to move our field of pediatric intestinal failure forward.  

I completed my PhD in clinical epidemiology with a focus on evaluating burden of care for caregivers of children with intestinal failure in 2021. My PhD work led to the development and implementation of an Intestinal Failure Patient and Family Advisory Committee, which allows clinical research teams and key caregiver stakeholders to set goals and build initiatives that benefit both patients and families. Our team worked closely with families and patients to determine the long-term impacts that care has on children diagnosed with intestinal failure. We found that caregivers were not receiving the supports they required to deliver care to children outside of the hospital.

After the completion of my PhD, I was interested in working with large administrative datasets around child health research. The opportunity to work with Dr. Eyal Cohen, Co-Director of the Edwin S.H. Leong Centre for Healthy Children, for my postdoctoral fellowship allowed the exploration of larger data sets for measuring children’s health, and I gained incredible experience in methodology and statistics in two projects.

The first study entitled Severe Respiratory Disease Among Children with and Without Medical Complexity During the COVID-19 Pandemic explored the impact of COVID on children with respiratory illness. This study highlighted the impact non-pharmaceutical interventions had with a reduction of over 45,000 admissions for respiratory illness: over 4,200 fever ICU admissions and among children with medical complexity, and 119 fewer deaths than expected during the first 2 years of the pandemic. The publication of this study in forthcoming.

The second project of my postdoctoral fellowship focused on the development of a latent class analysis to better define subgroups of children with medical complexity to allow for evaluation of outcomes for children and caregivers. Our study identified groups with distinct pregnancy, family sociodemographic, and early childhood variables that differed in outcomes of mortality and ICU admissions, particularly in children with multiorgan involvement and developmental disability. I hope these findings will allow for risk-stratification in outcome studies to better identify potential targets for interventions. Future work will involve exploring the use of these groups to evaluate other outcomes.

The opportunity to work with members of the Leong Centre has provided me with incredible learning opportunities and connections with individuals that share a passion in child health research. I hope to use the skills I have gained over the past two years to continue my work with the goal of implementing services that support providing care in the home setting.