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

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

doi:10.3389/fped.2021.682078

Frontiers in Pediatrics (Sep 2021)

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

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

Affiliations

Andrea Duncan: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Andrea Duncan: Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada
Dorothy Luong: Toronto Rehabilitation Institute, Toronto, ON, Canada
Laure Perrier: University of Toronto Libraries, University of Toronto, Toronto, ON, Canada
Mark T. Bayley: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Mark T. Bayley: Toronto Rehabilitation Institute, Toronto, ON, Canada
Mark T. Bayley: Division of Physical Medicine, University of Toronto, Toronto, ON, Canada
Gail Andrew: Department of Pediatrics, University of Alberta, Edmonton, AB, Canada
Kelly Arbour-Nicitopoulos: Faculty of Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada
Kelly Arbour-Nicitopoulos: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada
Brian Chan: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Brian Chan: Toronto Rehabilitation Institute, Toronto, ON, Canada
C. J. Curran: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada
Gina Dimitropoulos: Faculty of Social Work, University of Calgary, Calgary, AB, Canada
Laura Hartman: Faculty of Social Work, University of Calgary, Calgary, AB, Canada
Lennox Huang: 0Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
Lennox Huang: 1The Hospital for Sick Children, Toronto, ON, Canada
Monika Kastner: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Monika Kastner: 2Department of Family and Community Medicine, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
Monika Kastner: 3North York General Hospital, Toronto, ON, Canada
Shauna Kingsnorth: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada
Shauna Kingsnorth: 4Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada
Anna McCormick: 5Department of Pediatrics, University of Ottawa, Ottawa, ON, Canada
Anna McCormick: 6Children's Hospital of Eastern Ontario, Ottawa, ON, Canada
Michelle Nelson: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Michelle Nelson: 7Sinai Health System, Toronto, ON, Canada
David Nicholas: Faculty of Social Work, University of Calgary, Calgary, AB, Canada
Melanie Penner: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Melanie Penner: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada
Melanie Penner: 0Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
Laura Thompson: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada
Alene Toulany: 0Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
Alene Toulany: 1The Hospital for Sick Children, Toronto, ON, Canada
Amanda Woo: Toronto Rehabilitation Institute, Toronto, ON, Canada
Joanne Zee: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Joanne Zee: Toronto Rehabilitation Institute, Toronto, ON, Canada
Sarah E. P. Munce: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
Sarah E. P. Munce: Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada
Sarah E. P. Munce: Toronto Rehabilitation Institute, Toronto, ON, Canada

DOI: https://doi.org/10.3389/fped.2021.682078
Journal volume & issue: Vol. 9

Abstract

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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.

Published in Frontiers in Pediatrics

ISSN: 2296-2360 (Online)
Publisher: Frontiers Media S.A.
Country of publisher: Switzerland
LCC subjects: Medicine: Pediatrics
Website: http://journal.frontiersin.org/journal/pediatrics

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