Transition Research
Publications
Our Hub members are passionate about disseminating reserach knowledge on healthcare transition spanning multiple disciplines. Research studies are categorized below.
*indicates open access articles
| Patient Navigation |
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Reid, A. E., Doucet, S., & Luke, A. (2020). Exploring the role of lay and professional patient navigators in Canada. Journal of Health Services Research & Policy, 25(4), 229–237. https://doi.org/10.1177/1355819620911679
*Reid, A. E., Doucet, S., Luke, A., Azar, R., & Horsman, A. R. (2019). The impact of patient navigation: A scoping review protocol. JBI Database of Systematic Reviews and Implementation Reports, 17(6), 1079–1085. https://doi.org/10.11124/JBISRIR-2017-003958
Allemang, B., Allan, K., Johnson, C., Cheong, M., Cheung, P., Odame, I., Ward, R., Williams, S. Mukerji, G., & Kuo, K. (2019). Impact of a Transition Program with Navigator on Loss to Follow-Up, Medication Adherence and Appointment Attendance in Hemoglobinopathies. Pediatric Blood & Cancer, e27781. https://doi.org/10.1002/pbc.27781
*Dimitropoulos, G., Morgan-Maver, E., Allemang, B., Schraeder, K., Scott, S. D., Pinzon, J., Andrew, G., Guilcher, G., Hamiwka, L., Lang, E., McBrien, K., Nettel-Aguirre, A., Pacaud, D., Zwaigenbaum, L., Mackie, A., & Samuel, S. (2019). Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care. BMC Health Services Research, 19(1), 390. https://doi.org/10.1186/s12913-019-4227-6
*Doucet, S., Luke, A., Splane, J., & Azar, R. (2019). Patient Navigation as an Approach to Improve the Integration of Care: The Case of NaviCare/SoinsNavi. International Journal of Integrated Care, 19(4), 7. https://doi.org/10.5334/ijic.4648
Kelly, K. J., Doucet, S., & Luke, A. (2019). Exploring the roles, functions, and background of patient navigators and case managers: A scoping review. International Journal of Nursing Studies, 98, 27–47. https://doi.org/10.1016/j.ijnurstu.2019.05.016
Luck, K. E., Doucet, S., & Luke, A. (2019). The Development of a Logic Model to Guide the Planning and Evaluation of a Navigation Center for Children and Youth with Complex Care Needs. Child & Youth Services, 1–15. https://doi.org/10.1080/0145935X.2019.1684192
*Luke, A., Doucet, S., & Azar, R. (2018). Paediatric patient navigation models of care in Canada: An environmental scan. Paediatrics & Child Health, 23(3), e46–e55. https://doi.org/10.1093/pch/pxx176
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| Transition Care Interventions |
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*Doucet, S., Curran, J. A., Breneol, S., Luke, A., Dionne, E., Azar, R., Reid, A. E., McKibbon, S., Horsman, A. R., & Binns, K. (2020). Programmes to support transitions in care for children and youth with complex care needs and their families: A scoping review protocol. BMJ Open, 10(6), e033978. https://doi.org/10.1136/bmjopen-2019-033978
*Levy, B. B., Song, J. Z., Luong, D., Perrier, L., Bayley, M. T., Andrew, G., Arbour-Nicitopoulos, K., Chan, B., Curran, C. J., Dimitropoulos, G., Hartman, L., Huang, L., Kastner, M., Kingsnorth, S., McCormick, A., Nelson, M., Nicholas, D., Penner, M., Thompson, L., … Munce, S. E. P. (2020). Transitional Care Interventions for Youth With Disabilities: A Systematic Review. Pediatrics, 146(5), e20200187. https://doi.org/10.1542/peds.2020-0187
Nguyen, L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A. K., & Gorter, J. W. (2020). Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative meta‐ethnography. Child: Care, Health and Development, cch.12804. https://doi.org/10.1111/cch.12804
*Mackie, A. S., Rempel, G. R., Kovacs, A. H., Kaufman, M., Rankin, K. N., Jelen, A., Yaskina, M., Sananes, R., Oechslin, E., Dragieva, D., Mustafa, S., Williams, E., Schuh, M., Manlhiot, C., Anthony, S. J., Magill-Evans, J., Nicholas, D., & McCrindle, B. W. (2018). Transition Intervention for Adolescents With Congenital Heart Disease. Journal of the American College of Cardiology, 71(16), 1768–1777. https://doi.org/10.1016/j.jacc.2018.02.043
*Gorter, J. W., Stewart, D., Cohen, E., Hlyva, O., Morrison, A., Galuppi, B., Nguyen, T., Amaria, K., Punthakee, Z., Arora, S., Brill, H., Cairney, J., Don-Wauchope, A., Grant, C., Nagel, K., Rosenbaum, P., Kim, H.-J., Lacombe-Duncan, A., Weiser, N., & TRACE Study group. (2015). Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: A mixed-methods longitudinal prospective cohort study. BMJ Open, 5(5), e007553–e007553. https://doi.org/10.1136/bmjopen-2014-007553
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| Transition Outcome Measure |
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*Klassen, A. F., Grant, C., Barr, R., Brill, H., Kraus de Camargo, O., Ronen, G. M., Samaan, M. C., Mondal, T., Cano, S. J., Schlatman, A., Tsangaris, E., Athale, U., Wickert, N., & Gorter, J. W. (2015). Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: The TRANSITION-Q. Child: Care, Health and Development, 41(4), 547–558. https://doi.org/10.1111/cch.12207
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| Recommendations |
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Li, L., Polanski, A., Lim, A., & Strachan, P. H. Transition to adult care for youth with medical complexity: Assessing needs and setting priorities for a health care improvement initiative. Journal of Pediatric Nursing: Nursing Care of Children and Families. https://doi.org/10.1016/j.pedn.2021.08.006
Mackie, A. S., Fournier, A., Swan, L., Marelli, A. J., & Kovacs, A. H. (2019). Transition and Transfer From Pediatric to Adult Congenital Heart Disease Care in Canada: Call For Strategic Implementation. Canadian Journal of Cardiology, 35(12), 1640–1651. https://doi.org/10.1016/j.cjca.2019.08.014
*Schraeder, K., Dimitropoulos, G., Allemang, B., McBrien, K., & Samuel, S. (2020). Strategies for improving primary care for adolescents and young adults transitioning from pediatric services: Perspectives of Canadian primary health care professionals. Family Practice, 1-10. https://doi.org/10.1093/fampra/cmaa113
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| Patient Perspectives |
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*Li, L., Bird, M., Carter, N., Ploeg, J., Gorter, J. W., & Strachan, P. H. (2020). Experiences of youth with medical complexity and their families during the transition to adulthood: A meta-ethnography. Journal of Transition Medicine, 2(1). https://doi.org/10.1515/jtm-2020-0002
Catena, G., Rempel, G. R., Kovacs, A. H., Rankin, K. N., Muhll, I. V., & Mackie, A. S. (2018). “Not such a kid thing anymore”: Young adults’ perspectives on transfer from paediatric to adult cardiology care. Child: Care, Health and Development, 44(4), 592–598. https://doi.org/10.1111/cch.12564
*Nguyen, T., Henderson, D., Stewart, D., Hlyva, O., Punthakee, Z., & Gorter, J. W. (2016). You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management: Self-management for youth with chronic health conditions. Child: Care, Health and Development, 42(4), 464–472. https://doi.org/10.1111/cch.12334
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| Mental Health |
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*Toulany, A., Stukel, T. A., Kurdyak, P., Fu, L., & Guttmann, A. (2019). Association of Primary Care Continuity With Outcomes Following Transition to Adult Care for Adolescents With Severe Mental Illness. JAMA Network Open, 2(8), e198415. https://doi.org/10.1001/jamanetworkopen.2019.8415
Dimitropoulos, G., Herschman, J., Toulany, A., & Steinegger, C. (2016). A qualitative study on the challenges associated with accepting familial support from the perspective of transition-age youth with eating disorders. Eating Disorders, 24(3), 255–270. https://doi.org/10.1080/10640266.2015.1064276
Ferro, M. A., Gorter, J. W., & Boyle, M. H. (2015). Trajectories of depressive symptoms during the transition to young adulthood: The role of chronic illness. Journal of Affective Disorders, 174, 594–601. https://doi.org/10.1016/j.jad.2014.12.014
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| Neurodevelopmental Disabilities |
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Nguyen, L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A. K., & Gorter, J. W. (2020). Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative meta‐ethnography. Child: Care, Health and Development, cch.12804. https://doi.org/10.1111/cch.12804
*Freeman, M., Stewart, D., Cunningham, C. E., & Gorter, J. W. (2018). Information needs of young people with cerebral palsy and their families during the transition to adulthood: A scoping review. Journal of Transition Medicine, 1(1). https://doi.org/10.1515/jtm-2018-0003
Nguyen, T., Stewart, D., & Gorter, J. W. (2018). Looking back to move forward: Reflections and lessons learned about transitions to adulthood for youth with disabilities. Child: Care, Health and Development, 44(1), 83–88. https://doi.org/10.1111/cch.12534
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| Chronic Rheumatic Conditions |
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*McColl, J., Semalulu, T., Beattie, K. A., Alam, A., Thomas, S., Herrington, J., Gorter, J. W., Cellucci, T., Garner, S., Heale, L., Matsos, M., & Batthish, M. (2021). Transition Readiness in Adolescents With Juvenile Idiopathic Arthritis and Childhood‐Onset Systemic Lupus Erythematosus. ACR Open Rheumatology, 3(4), 260–265. https://doi.org/10.1002/acr2.11237
*Semalulu, T., McColl, J., Alam, A., Thomas, S., Herrington, J., Gorter, J. W., Cellucci, T., Garner, S., Heale, L., Matsos, M., Beattie, K. A., & Batthish, M. (2021). The transition from pediatric to adult rheumatology care through creating positive and productive patient-provider relationships: An opportunity often forgotten. Journal of Transition Medicine, 3(1), 20210001. https://doi.org/10.1515/jtm-2021-0001
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| Cardiovascular Conditions |
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*Allemang, B. A., Bradley, J., Leone, R., & Henze, M. (2020). Transitions to Postsecondary Education in Young Adults with Hemoglobinopathies: Perceptions of Patients and Staff. Pediatric Quality & Safety, 5(5), e349. https://doi.org/10.1097/pq9.0000000000000349
Chung, R. J., Mackie, A. S., Baker, A., & de Ferranti, S. D. (2020). Cardiovascular Risk and Cardiovascular Health Behaviours in the Transition From Childhood to Adulthood. Canadian Journal of Cardiology, 36(9), 1448–1457. https://doi.org/10.1016/j.cjca.2020.05.041
*Mondal, T. K., Muddaluru, V., Jaafar, A., Gupta-Bhatnagar, S., Greville, L. J., & Gorter, J. W. (2020). Transition of adolescents with congenital heart disease from pediatric to adult congenital cardiac care: Lessons from a retrospective cohort study. Journal of Transition Medicine, 2(1). https://doi.org/10.1515/jtm-2019-0003
Mackie, A. S., Fournier, A., Swan, L., Marelli, A. J., & Kovacs, A. H. (2019). Transition and Transfer From Pediatric to Adult Congenital Heart Disease Care in Canada: Call For Strategic Implementation. Canadian Journal of Cardiology, 35(12), 1640–1651. https://doi.org/10.1016/j.cjca.2019.08.014
Catena, G., Rempel, G. R., Kovacs, A. H., Rankin, K. N., Muhll, I. V., & Mackie, A. S. (2018). “Not such a kid thing anymore”: Young adults’ perspectives on transfer from paediatric to adult cardiology care. Child: Care, Health and Development, 44(4), 592–598. https://doi.org/10.1111/cch.12564
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| Chronic and Complex Conditions |
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*Doucet, S., Curran, J. A., Breneol, S., Luke, A., Dionne, E., Azar, R., Reid, A. E., McKibbon, S., Horsman, A. R., & Binns, K. (2020). Programmes to support transitions in care for children and youth with complex care needs and their families: A scoping review protocol. BMJ Open, 10(6), e033978. https://doi.org/10.1136/bmjopen-2019-033978
*Li, L., Bird, M., Carter, N., Ploeg, J., Gorter, J. W., & Strachan, P. H. (2020). Experiences of youth with medical complexity and their families during the transition to adulthood: A meta-ethnography. Journal of Transition Medicine, 2(1). https://doi.org/10.1515/jtm-2020-0002
*Bhawra, J., Toulany, A., Cohen, E., Moore Hepburn, C., & Guttmann, A. (2016). Primary care interventions to improve transition of youth with chronic health conditions from paediatric to adult healthcare: A systematic review. BMJ Open, 6(5), e011871. https://doi.org/10.1136/bmjopen-2016-011871
*Nguyen, T., Henderson, D., Stewart, D., Hlyva, O., Punthakee, Z., & Gorter, J. W. (2016). You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management: Self-management for youth with chronic health conditions. Child: Care, Health and Development, 42(4), 464–472. https://doi.org/10.1111/cch.12334
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Ongoing Studies
| TRANSITION TO ADULTHOOD DURING COVID-19: Learning from Canadian Youth with Special Healthcare Needs and their Families to Foster Effective Transitional Care Interventions |
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Stay tuned for the next phase of this research project where we will be inviting youth and families across Canada to participate in a Virtual Town Hall discussion in February 2024.
Passage à l’âge adulte pendant la COVID-19 : Apprendre des jeunes Canadiens ayant des besoins particuliers en matière de soins de santé et de leurs familles pour favoriser des interventions efficaces en matière de soins de transition Restez à l'affût pour la prochaine phase de ce projet de recherche où nous inviterons les jeunes et les familles de partout au Canada à participer à une discussion lors d'une Assemblée Virtuelle en février 2024. Contactez Barb Galuppi pour plus d'informations.
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| Evaluating Innovations in Transition From Pediatric to Adult Care - The Transition Navigator Trial (TNT) |
| The Transition Navigator Trial (TNT) is a pragmatic randomized controlled trial evaluating the effectiveness of usual care plus a patient navigator service versus usual care plus newsletters and other educational materials, to improve transition outcomes among adolescents aged 16-21 who have chronic health conditions requiring transfer to adult specialty care. Learn more |
| TRansition US Together (TRUST) Study |
| A Parent-Centered Educational Toolkit to Support Their Adolescents with Juvenile Idiopathic Arthritis (JIA) and childhood-onset Systemic Lupus Erythematosus (cSLE) as they Transition To Adult Care. Learn more |
