Research

Medical advances have allowed many more Children and youth with medical complexity (CMC) to survive well into adulthood. However, this has not been matched with increases in availability of supports as they transition into the adult care system. The study aim of PITCare is to assess whether intensive transition support led by an advance practice nurse during transition to adult care for 2 years will improve continuity of care, compared to usual care in CMC. The youth will be randomized to either receive intensive transition support until approximately age 19.5 or usual care until age 18. Other outcomes related to the youth/family experience, health outcomes and the value of the intervention are being assessed quantitatively and qualitatively.

Publications:

Santos, S., Thomson, D., Diaz, S., Soscia, J., Adams, S., Amin, R., Bernstein, S., Blais, B., Bruno, N., Colapinto, K., Espin, S., Fayed, N., Greenaway, J., Henze, M., Ivers, N. M., LeGrow, K., Lim, A., Lippett, R., Lunsky, Y., Macarthur, C., … Cohen, E. (2024). Promoting Intensive Transitions for Children and Youth with Medical Complexity from Paediatric to Adult Care: the PITCare study-protocol for a randomised controlled trial. BMJ open, 14(12), e086088.

This project aims to develop and validate an electronic medical record (EMR) algorithm to identify children with medical complexity (CMC), particularly those approaching transition to adult care. Using CCKO’s standard criteria for CMC, preliminary work demonstrates strong accuracy in identifying eligible youth for recruitment to a targeted intervention and performs consistently when validated in a broader set of patients. This work holds promise for broader applications in program planning, quality improvement, and population health monitoring. Ongoing efforts are focused on testing the application of the algorithm at a provincial level.

Unpaid caregivers are family members, friends or others who provide support for individuals who need care due to physical, cognitive, intellectual or developmental disabilities; medical conditions; mental illness; or needs related to aging. The ‘Caring in Canada’ national caregiving survey was carried out to better understand Canada’s caregiving landscape and its effects on caregivers, including time spent on caregiving, relationships between caregivers and care recipients, caregiver well­being and supports for caregivers. Understanding the predictors of poor health and financial burden among caregivers will help target at­ risk caregivers with necessary supports to improve their outcomes, and consequently those of their care recipients.

Publications:

Benjamin, H., Robibaro, F., Thomson, D., Bruno, G., Lunsky, Y., Janeiro, J., Mendelsohn, L., Stall, N. M., & Cohen, E. (2025). Exploring factors associated with the physical, mental, and financial health of unpaid caregivers: An analysis of the Canadian National Caregiving Survey. Canadian journal of public health = Revue canadienne de sante publique, 10.17269/s41997-025-01133-2. Advance online publication. https://doi.org/10.17269/s41997-025-01133-2

Experiencing infant adversity (stillbirth, neonatal death, severe neonatal morbidity, major congenital anomaly, prematurity, and neurologic impairment) can be a lifechanging and stressful event affecting maternal health and subsequent pregnancies. These studies aim at exploring the effects of experiencing infant adversity on subsequent maternal health, mortality risk, health-care utilization, employment status and pregnancies.

Publications:

Belza, C., Szentkúti, P., Horváth-Puhó, E., Ray, J. G., Nelson, K. E., Grandi, S. M., Brown, H. K., Sørensen, H. T., & Cohen, E. (2024). Use of latent class analysis to predict intensive care unit admission and mortality in children with a major congenital anomaly. The Journal of Pediatrics, 270, 114013.

Cohen, E., Horváth-Puhó, E., Ray, J. G., Pedersen, L., Adler, N., Ording, A. G., Wise, P. H., Milstein, A., & Toft Sørensen, H. (2016). Association between the birth of an infant with major congenital anomalies and subsequent risk of mortality in their mothers. JAMA, 316(23), 2515.

Cohen, E., Horváth-Puhó, E., Ray, J. G., Pedersen, L., Ehrenstein, V., Adler, N., Vigod, S., Milstein, A., & Sørensen, H. T. (2018). Cardiovascular disease among women who gave birth to an infant with a major congenital anomaly. JAMA Network Open, 1(5).

Cohen, E., Szentkúti, P., Horváth-Puhó, E., Brown, H. K., Grandi, S. M., Sørensen, H. T., & Ray, J. G. (2022). Interpregnancy weight change among mothers of a child with a major congenital anomaly: A Danish nationwide Cohort Study. Clinical Epidemiology, Volume 14, 425–436.

Fuller, A. E., Horváth-Puhó, E., Ray, J. G., Ehrenstein, V., Sørensen, H. T., & Cohen, E. (2021). Mortality among parents of children with major congenital anomalies. Pediatrics, 147(5).

Kim, K. M., Farkas, D. K., Wong, V., Hjorth, C. F., Horváth-Puhó, E., Cahan, E., Cohen, E., Shah, N. R., Sørensen, H. T., & Milstein, A. (2024). Association between maternal employment status and presence of children with major congenital anomalies in Denmark. BMC Public Health, 24(1).

Rotberg, B., Horváth‐Puhó, E., Vigod, S., Ray, J. G., Sørensen, H. T., & Cohen, E. (2020). Increased maternal new‐onset psychiatric disorders after delivering a child with a major anomaly: A cohort study. Acta Psychiatrica Scandinavica, 142(4), 264–274.