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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We are looking for youth with special healthcare needs to share your experience transitioning from pediatric to adult healthcare services during the pandemic. (diagnosed with a disability or chronic physical/mental health condition):
Contact Barb Galuppi to participate in this research study
Nous recherchons des jeunes ayant des besoins spéciaux en matière de soins de santé (diagnostiqués avec un handicap ou avec un problème de santé chronique soit physique, soit de santé mentale)
Pour participer à cette étude, communique avec Barb Galuppi .
Click here for French/English (Cliquez ici pour français/anglaise)
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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 |
