Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study

Alene Toulany^{1

2

3}, Dmitry Khodyakov⁴, Sarah Mooney^{5

6}, Lisa Stromquist⁷, Katherine Bailey^{1

3}, Claire Eh Barber⁸, Michelle Batthish⁹, Kristin Cleverley^{1

10

11}, Gina Dimitropoulos⁸, Jan Willem Gorter^{12

13}, Danijela Grahovac^{13

14}, Ruth Grimes¹⁵, Beverly Guttman¹⁶, Michèle L Hébert¹⁷, Tomisin John¹⁸, Lisha Lo¹⁹, Dorothy Luong²⁰, Laura MacGregor²¹, Geetha Mukerji²², Jacklynn Pidduck²³, Vjura Senthilnathan¹⁸, Rayzel Shulman^{1

24}, Patricia Trbovich^{3

25}, Sarah Ep Munce^{20

26

27}

Affiliations

¹ Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
² Department of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
³ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
⁴ RAND, Santa Monica, CA, United States.
⁵ Stollery Children's Hospital, Alberta Health Services, Edmonton, AB, Canada.
⁶ Alberta Strategy for Patient Oriented Research Support Unit, University of Calgary, Calgary, AB, Canada.
⁷ Children's Healthcare Canada, Ottawa, ON, Canada.
⁸ Department of Medicine, University of Calgary, Calgary, AB, Canada.
⁹ Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
¹⁰ Centre for Addiction and Mental Health, Toronto, ON, Canada.
¹¹ Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
¹² Department of Rehabilitation, Physical Therapy Science & Sports, Wilhelmina Children's Hospital, Utrecht, Netherlands.
¹³ CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
¹⁴ Children's Healthcare Canada, National Health Hub in Transition, Hamilton, ON, Canada.
¹⁵ Canadian Pediatric Society, Winnipeg, MB, Canada.
¹⁶ Provincial Council for Maternal and Child Health, Toronto, ON, Canada.
¹⁷ Faculty of Rehabilitation Medicine, Department of Occupational Therapy, University of Alberta, Edmonton, AB, Canada.
¹⁸ Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
¹⁹ Centre for Quality Improvement and Patient Safety, University of Toronto, Toronto, ON, Canada.
²⁰ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
²¹ Martin Luther University College, Waterloo, ON, Canada.
²² Women's Institute of Health Systems Solutions and Virtual Care, Women's College Hospital, Toronto, ON, Canada.
²³ IWK Health, Halifax, NS, Canada.
²⁴ Division of Endocrinology, Department of Paediatrics, University of Toronto, Toronto, ON, Canada.
²⁵ Patient Safety and Quality Improvement, North York General Hospital, Toronto, ON, Canada.
²⁶ KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
²⁷ Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.

PMID: 38889353
PMCID: PMC11422730
DOI: 10.2196/60860

Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study

Alene Toulany et al. JMIR Res Protoc. 2024.

. 2024 Sep 10:13:e60860.

doi: 10.2196/60860.

Authors

Affiliations

¹ Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
² Department of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
³ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
⁴ RAND, Santa Monica, CA, United States.
⁵ Stollery Children's Hospital, Alberta Health Services, Edmonton, AB, Canada.
⁶ Alberta Strategy for Patient Oriented Research Support Unit, University of Calgary, Calgary, AB, Canada.
⁷ Children's Healthcare Canada, Ottawa, ON, Canada.
⁸ Department of Medicine, University of Calgary, Calgary, AB, Canada.
⁹ Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
¹⁰ Centre for Addiction and Mental Health, Toronto, ON, Canada.
¹¹ Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
¹² Department of Rehabilitation, Physical Therapy Science & Sports, Wilhelmina Children's Hospital, Utrecht, Netherlands.
¹³ CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
¹⁴ Children's Healthcare Canada, National Health Hub in Transition, Hamilton, ON, Canada.
¹⁵ Canadian Pediatric Society, Winnipeg, MB, Canada.
¹⁶ Provincial Council for Maternal and Child Health, Toronto, ON, Canada.
¹⁷ Faculty of Rehabilitation Medicine, Department of Occupational Therapy, University of Alberta, Edmonton, AB, Canada.
¹⁸ Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
¹⁹ Centre for Quality Improvement and Patient Safety, University of Toronto, Toronto, ON, Canada.
²⁰ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
²¹ Martin Luther University College, Waterloo, ON, Canada.
²² Women's Institute of Health Systems Solutions and Virtual Care, Women's College Hospital, Toronto, ON, Canada.
²³ IWK Health, Halifax, NS, Canada.
²⁴ Division of Endocrinology, Department of Paediatrics, University of Toronto, Toronto, ON, Canada.
²⁵ Patient Safety and Quality Improvement, North York General Hospital, Toronto, ON, Canada.
²⁶ KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
²⁷ Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.

PMID: 38889353
PMCID: PMC11422730
DOI: 10.2196/60860

Abstract

Background: The transition from pediatric to adult care poses a significant health system-level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Unfortunately, existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, and its applicability across chronic conditions, primary care involvement, and health equity considerations.

Objective: Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and mental health conditions, clinical care settings, and health jurisdictions.

Methods: Using an integrated knowledge translation (iKT) approach, a panel comprising youth, caregivers, interdisciplinary health care providers, and health system leaders will be established to collaborate with our research team to ensure that the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study (n=160) to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition; and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian context. Using the RAND/UCLA Appropriateness Method (RAM) multistage analytic approach, data from each panel and stakeholder group will be examined separately and compared to establish a key set of indicators endorsed by both panels.

Results: The study is funded by the Canadian Institutes of Health Research and Physicians Services Incorporated.

Conclusions: This study will produce quality indicators to evaluate and inform action equitably to improve transition from pediatric to adult care for youth and their families in Canada.

International registered report identifier (irrid): PRR1-10.2196/60860.

Keywords: Delphi; adolescent; adolescent health; caregivers; chronic conditions; consensus; patient engagement; quality indicators; stakeholder engagement; transition to adult care.

©Alene Toulany, Dmitry Khodyakov, Sarah Mooney, Lisa Stromquist, Katherine Bailey, Claire EH Barber, Michelle Batthish, Kristin Cleverley, Gina Dimitropoulos, Jan Willem Gorter, Danijela Grahovac, Ruth Grimes, Beverly Guttman, Michèle L Hébert, Tomisin John, Lisha Lo, Dorothy Luong, Laura MacGregor, Geetha Mukerji, Jacklynn Pidduck, Vjura Senthilnathan, Rayzel Shulman, Patricia Trbovich, Sarah EP Munce. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 10.09.2024.

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Conflict of interest statement

Conflicts of Interest: None declared.

References

1. Toulany A, Gorter JW, Harrison M. A call for action: recommendations to improve transition to adult care for youth with complex health care needs. Paediatr Child Health. 2022 Apr 13;27(5):297–309. doi: 10.1093/pch/pxac047. https://europepmc.org/abstract/MED/36016593 pxac047 - DOI - PMC - PubMed
1. Kaufman M, Pinzon J. Transition to adult care for youth with special health care needs. Paediatr Child Health. 2007 Nov 01;12(9):785–793. doi: 10.1093/pch/12.9.785. https://europepmc.org/abstract/MED/19030468 - DOI - PMC - PubMed
1. A Guideline for Transition From Paediatric to Adult Health Care for Youth with Special Health Care Needs: A National Approach. Canadian Association of Paediatric Health Centres (CAPHC), National Transitions Community of Practice. 2016. Jun, [2021-06-23]. https://www.childhealthbc.ca/sites/default/files/caphc_transition_to_adu... .
1. Pinzon J, Havrvey J, Society C.P, Committee A.H. Care of adolescents with chronic conditions. Paediatrics & Child Health. 2006 Jan 01;11(1):43–48. doi: 10.1093/pch/11.1.43. - DOI
1. Quality standards: transitions from youth to adult health care services. Care for Young People Aged 15 to 24 Years. Ontario Health. 2022. [2024-06-13]. https://www.hqontario.ca/evidence-to-improve-care/quality-standards/view... .

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Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study

Affiliations

Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study

Authors

Affiliations

Abstract

Conflict of interest statement

References

MeSH terms

LinkOut - more resources

Full Text Sources

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