Transition Research

The GrowDMD project studies the challenges that adolescents and young adults with Duchenne muscular dystrophy (DMD) face when transitioning from the pediatric to adult healthcare system in three partner countries: Germany, Italy, and Canada. For patients with Duchenne Muscular Dystrophy (DMD) the transition period poses unique challenges due to the decline of many body functions during adolescence.

In Phase I of the study, we interviewed youth with DMD and their parents to learn about their experiences related to transition. We also interviewed healthcare providers to learn about their experiences with providing care in the existing transition pathways in the three countries. Our early findings from these interviews can be found here:

• The Journey of Growing up with Duchenne
• Accompanying Adulthood - What (Health) Professionals Say
• Transition of Care in DMD - Patients' and Caregivers' Experiences

In the current Phase II of the study, youth and caregivers are being asked to complete surveys about their health and functioning, mental well-being, participation in the community, and experiences with the transition process. We plan to use this information to develop recommendations for policy and clinical practice to improve the quality of transition and opportunities for participation for DMD patients.

To learn more about the study check out our website: https://www.growdmd.org

In this patient-oriented research project, researchers, young adults, and parents have partnered to explore the impact of the pandemic on youth with special healthcare needs between 16-24 years of age, during their transition to adult services. Special healthcare needs may include developmental, physical, or mental health conditions. We aim to understand the positive and negative experiences in healthcare transitions as well as co-occurring life transitions. Learn more about this collaborative work to gain a richer understanding of the pandemic experience, and how we aim to make recommendations to help improve healthcare experiences and transitional care interventions in the future.

TRANSITION VERS L’ÂGE ADULTE PENDANT LA COVID-19 : Apprendre des jeunes Canadiens ayant des besoins spéciaux en soins de santé et de leurs familles pour favoriser des interventions efficaces en matière de soins de transition

Dans ce projet de recherche axé sur les patients, des chercheurs, de jeunes adultes et des parents se sont associés pour explorer l'impact de la pandémie sur les jeunes âgés de 16 à 24 ans ayant des besoins spéciaux en soins de santé, durant leur transition vers les services pour adultes. Les besoins spéciaux en soins de santé peuvent inclure des troubles développementaux, physiques ou de santé mentale. Notre objectif est de comprendre les expériences positives et négatives vécues lors des transitions de soins de santé ainsi que durant d’autres transitions de vie en parallèle. Apprenez-en davantage sur ce travail collaboratif pour obtenir une meilleure compréhension de l’expérience pandémique, et sur la façon dont nous visons à formuler des recommandations pour améliorer les expériences de soins de santé et les interventions de soins transitionnels à l’avenir.

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

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

• 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

• *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

• *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

• 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

• *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

• *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

• 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

• *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

• *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

• *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