{"id":823,"date":"2023-03-07T22:11:20","date_gmt":"2023-03-07T22:11:20","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/cohen\/?page_id=823"},"modified":"2025-04-10T15:55:40","modified_gmt":"2025-04-10T15:55:40","slug":"research","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/","title":{"rendered":"Research"},"content":{"rendered":"

Current research projects<\/h2><\/div>

To view a full list of publications, visit our Google Scholar<\/a>.<\/p>\n<\/div>

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Promoting Intensive Transitions for Children and Youth with Medical Complexity from Pediatric to Adult Care<\/h3><\/div>
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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.<\/p>\n

Publications:<\/h4>\n

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., \u2026 Cohen, E. (2024).\u00a0Promoting Intensive Transitions for Children and Youth with Medical Complexity from Paediatric to Adult Care: the PITCare study-protocol for a randomised controlled trial<\/a>. BMJ open, 14(12), e086088.<\/p>\n<\/div><\/div><\/div>

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The health and financial burden outcomes of unpaid family caregivers: An analysis of the Caring in Canada Survey<\/h3><\/div>
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Unpaid caregivers are family members, friends or others who provide support for individuals who need care due to physical, cognitive, intellectual or developmental disabilities\u037e medical conditions\u037e mental illness\u037e or needs related to aging. The \u2018Caring in Canada\u2019 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 well\u00adbeing and supports for caregivers. Understanding the predictors of poor health and financial burden among caregivers will help target at\u00ad risk caregivers with necessary supports to improve their outcomes, and consequently those of their care recipients.<\/div><\/div><\/div>
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Health and subsequent pregnancy outcomes of mothers who experience infant adversity<\/h3><\/div>
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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.<\/p>\n

Publications:<\/h4>\n

Belza, C., Szentk\u00fati, P., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Nelson, K. E., Grandi, S. M., Brown, H. K., S\u00f8rensen, 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.<\/a> The Journal of Pediatrics, 270, 114013.<\/p>\n

Cohen, E., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Pedersen, L., Adler, N., Ording, A. G., Wise, P. H., Milstein, A., & Toft S\u00f8rensen, H. (2016). Association between the birth of an infant with major congenital anomalies and subsequent risk of mortality in their mothers<\/a>. JAMA, 316(23), 2515.<\/p>\n

Cohen, E., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Pedersen, L., Ehrenstein, V., Adler, N., Vigod, S., Milstein, A., & S\u00f8rensen, H. T. (2018). Cardiovascular disease among women who gave birth to an infant with a major congenital anomaly<\/a>. JAMA Network Open, 1(5).<\/p>\n

Cohen, E., Szentk\u00fati, P., Horv\u00e1th-Puh\u00f3, E., Brown, H. K., Grandi, S. M., S\u00f8rensen, H. T., & Ray, J. G. (2022). Interpregnancy weight change among mothers of a child with a major congenital anomaly: A Danish nationwide Cohort Study<\/a>. Clinical Epidemiology, Volume 14, 425\u2013436.<\/p>\n

Fuller, A. E., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Ehrenstein, V., S\u00f8rensen, H. T., & Cohen, E. (2021). Mortality among parents of children with major congenital anomalies<\/a>. Pediatrics, 147(5).<\/p>\n

Kim, K. M., Farkas, D. K., Wong, V., Hjorth, C. F., Horv\u00e1th-Puh\u00f3, E., Cahan, E., Cohen, E., Shah, N. R., S\u00f8rensen, H. T., & Milstein, A. (2024). Association between maternal employment status and presence of children with major congenital anomalies in Denmark. BMC Public Health<\/a>, 24(1).<\/p>\n

Rotberg, B., Horv\u00e1th\u2010Puh\u00f3, E., Vigod, S., Ray, J. G., S\u00f8rensen, H. T., & Cohen, E. (2020). Increased maternal new\u2010onset psychiatric disorders after delivering a child with a major anomaly: A cohort study.<\/a> Acta Psychiatrica Scandinavica, 142(4), 264\u2013274.<\/p>\n<\/div><\/div><\/div>

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Developing patient-reported outcome measures of feeding performance and satisfaction with medical devices for children with complex care needs<\/h3><\/div>
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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 \u2018feeding performance\u2019 and \u2018satisfaction with assistive technology and medical devices\u2019 in these children. Insights from these interviews will inform the development of questionnaires on \u2018feeding\u2019 and the use of medical devices.<\/p>\n<\/div><\/div><\/div>

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