Research

Promoting Intensive Transitions for Children and Youth with Medical Complexity from Pediatric to Adult Care (PITCare)

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.

Santos, S., Orkin, J., Abells, D., Allemang, B., Arenas Rodriguez, B., Colapinto, K., Constas, N., Heath, M., Henze, M., John, T., Lippett, R., Miranda, S., Soscia, J., Teicher, J., Thomson, D., Tyrrell, J., Vandepoele, E., Wentzel, K., Yates, D., … Toulany, A. (2025). Building Bridges: Developing and Implementing a New Transition to Adult Care Program for Youth with Complex Healthcare Needs at a Canadian Children’s Hospital. Children, 12(8), 1043. https://doi.org/10.3390/children12081043

Other Work on Transition to Adult Care

We also conduct additional work evaluating transitions to adult services outside of the PITCare Trial.

Publications:

Malecki, S. L., Shen, T., Loffler, A., Stukel, T. A., de Oliveira, C., Roberts, S. B., Bassett, A. S., Nelson, K. E., Razak, F., Verma, A. A., & Cohen, E. (2026). Characteristics and outcomes of adults hospitalized with childhood-onset complex chronic conditions. JAMA Network Open, 9(1). https://doi.org/10.1001/jamanetworkopen.2025.53610

Malecki, S. L., DArienzo, D., Wennberg, E., Butler, E. A., Vediya, N., Vyas, M. V., McNiven, V., Cunningham, J., Stukel, T. A., Verma, A. A., Cohen, E., & Bassett, A. S. (2026). Adult outcomes of clinically relevant genomic disorders: A systematic review and meta-analysis. Genetics in Medicine, 28(2), 101632. https://doi.org/10.1016/j.gim.2025.101632

Malecki, S., Cohen, E., Verma, A. A., & Bassett, A. S. (2024). Closing gaps in care and knowledge for adults with complex genetic conditions. Canadian Medical Association Journal, 196(37). https://doi.org/10.1503/cmaj.240782

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.

Presentations:

Bruno-Boucher L, Santos S, Gill P, Sung L, Cohen E. Identifying children with medical complexity using an EMR-sourced data repository. Presented at PAS, 2026. 

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.

Our team conducted a study as part of the CCKO Provincial Strategy, involving qualitative interviews with parents of children with medical complexity. The study explores ‘feeding performance’ and ‘satisfaction with assistive technology and medical devices’ in these children. Insights from these interviews will inform the development of questionnaires on ‘feeding’ and the use of medical devices.

Presentations:

Fayed, N., Orkin, J., Major, N., Amin, R., Cohen, E. GEM-Tech: (2026). A ‘General Experience Of Medical Technology’ measure for caregivers and children with medical complexity (Co-CMC). ISPOR 2026. Philadelphia, PA.

Fayed, N. (2026). How Is Feeding Going? Parents talk to parents. 2026 International PFD Conference.

Fayed, N., Cohen, E., Major, N. (2024). ‘Medical Technology’ and ‘Family-Centred-Feeding’ measures for caregivers of children with medical complexity (Co-CMC). Pediatric Academic Society. Toronto, Canada.

Noyek, S., Fayed, N., Major, N., Orkin, J., Sidra, M., Cohen, E. (2020). Developing patient-reported outcome measures of ‘medical technology experiences’ for children with medical complexity (platform presentation). Pediatric Academic Societies Annual Meeting. Philadelphia, PA, USA.

Fayed, N., Noyek, S., Major, N., Orkin, J., Sidra, M., Cohen, E. (2020) A Tool to Evaluate the Impact and Experience of Medical Technology on Complex Children and Their Caregivers (poster presentation). Children’s Healthcare Canada Annual Conference (via web). Saskatchewan, Canada.

Noyek, S., Fayed, N., Major, N., Orkin, J., Sidra, M., Cohen, E. (2020) Developing patient-reported outcome measures of ‘medical technology experiences’ for children with medical complexity (poster presentation). Children’s Healthcare Canada Conference (via web), Saskatchewan, Canada.

Fayed, N., Turner, P., McGuire, M., Atoallah, S., Cohen, E. (2019) Obtaining Content for Patient-Reported Experience Measure for Children with Medical Complexity Using Peer Interviewers. International Society for Quality of Life Research. San Diego, United States.

McGuire, M., Atoallah-Eshqoor, S., Mutch, C., Fayed, N. (2018) Caregiver experiences of feeding children with medical complexity. Canadian Association of Occupational Therapy. Vancouver, Canada.