Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities

Andrea Duncan; Dorothy Luong; Laure Perrier; Mark T Bayley; Gail Andrew; Kelly Arbour-Nicitopoulos; Brian Chan; C J Curran; Gina Dimitropoulos; Laura Hartman; Lennox Huang; Monika Kastner; Shauna Kingsnorth; Anna McCormick; Michelle Nelson; David Nicholas; Melanie Penner; Laura Thompson; Alene Toulany; Amanda Woo; Joanne Zee; Sarah E P Munce

doi:10.3389/fped.2021.682078

Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities

Front Pediatr. 2021 Sep 13:9:682078. doi: 10.3389/fped.2021.682078. eCollection 2021.

Authors

Andrea Duncan^{1

2}, Dorothy Luong³, Laure Perrier⁴, Mark T Bayley^{1

3

5}, Gail Andrew⁶, Kelly Arbour-Nicitopoulos^{7

8}, Brian Chan^{1

3}, C J Curran⁸, Gina Dimitropoulos⁹, Laura Hartman⁹, Lennox Huang^{10

11}, Monika Kastner^{1

12

13}, Shauna Kingsnorth^{8

14}, Anna McCormick^{15

16}, Michelle Nelson^{1

17}, David Nicholas⁹, Melanie Penner^{1

8

10}, Laura Thompson⁸, Alene Toulany^{10

11}, Amanda Woo³, Joanne Zee^{1

3}, Sarah E P Munce^{1

2

3}

Affiliations

¹ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
² Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
³ Toronto Rehabilitation Institute, Toronto, ON, Canada.
⁴ University of Toronto Libraries, University of Toronto, Toronto, ON, Canada.
⁵ Division of Physical Medicine, University of Toronto, Toronto, ON, Canada.
⁶ Department of Pediatrics, University of Alberta, Edmonton, AB, Canada.
⁷ Faculty of Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada.
⁸ Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
⁹ Faculty of Social Work, University of Calgary, Calgary, AB, Canada.
¹⁰ Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
¹¹ The Hospital for Sick Children, Toronto, ON, Canada.
¹² Department of Family and Community Medicine, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
¹³ North York General Hospital, Toronto, ON, Canada.
¹⁴ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
¹⁵ Department of Pediatrics, University of Ottawa, Ottawa, ON, Canada.
¹⁶ Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
¹⁷ Sinai Health System, Toronto, ON, Canada.

Abstract

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.

Keywords: childhood; disability; intervention prioritization; modified Delphi; transitional care.

Copyright © 2021 Duncan, Luong, Perrier, Bayley, Andrew, Arbour-Nicitopoulos, Chan, Curran, Dimitropoulos, Hartman, Huang, Kastner, Kingsnorth, McCormick, Nelson, Nicholas, Penner, Thompson, Toulany, Woo, Zee and Munce.