A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada

Linda Nguyen^{1

2}, Claire Dawe-McCord^{3

4

5}, Michael Frost⁵, Musa Arafeh⁵, Kyle Chambers⁵, Dana Arafeh⁵, Kinga Pozniak⁶, Donna Thomson⁶, JoAnne Mosel⁶, Roberta Cardoso⁷, Barb Galuppi², Sonya Strohm², Alicia Via-Dufresne Ley⁷, Caitlin Cassidy⁸, Dayle McCauley², Shelley Doucet⁹, Hana Alazem¹⁰, Anne Fournier¹¹, Ariane Marelli¹², Jan Willem Gorter^{2

13

14}

Affiliations

¹ School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.
² CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
³ Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
⁴ Bachelor of Health Sciences Program, McMaster University, Hamilton, ON, Canada.
⁵ Patient and Family Advisory Council (young adult/patient partner), READYorNot™ Brain-Based Disabilities Project, CHILD-BRIGHT Network, Canada.
⁶ Patient and Family Advisory Council (Parent/Family Partner), READYorNot™ Brain-Based Disabilities Project, CHILD-BRIGHT Network, Canada.
⁷ McGill University Health Centre, Montreal, QC, Canada.
⁸ Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
⁹ Nursing and Health Sciences, University of New Brunswick, Saint John, NB, Canada.
¹⁰ Department of Pediatrics, Faculty of Medicine, University of Ottawa and Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
¹¹ CHU Mère-Enfant, Sainte Justine Hospital, Montreal, QC, Canada.
¹² Department of Medicine, Faculty of Medicine, McGill University, Montreal, QC, Canada.
¹³ Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, Netherlands.
¹⁴ Centre of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.

PMID: 38192636
PMCID: PMC10773791
DOI: 10.3389/fresc.2023.1305084

A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada

Linda Nguyen et al. Front Rehabil Sci. 2023.

. 2023 Dec 14:4:1305084.

doi: 10.3389/fresc.2023.1305084. eCollection 2023.

Authors

Affiliations

¹ School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.
² CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
³ Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
⁴ Bachelor of Health Sciences Program, McMaster University, Hamilton, ON, Canada.
⁵ Patient and Family Advisory Council (young adult/patient partner), READYorNot™ Brain-Based Disabilities Project, CHILD-BRIGHT Network, Canada.
⁶ Patient and Family Advisory Council (Parent/Family Partner), READYorNot™ Brain-Based Disabilities Project, CHILD-BRIGHT Network, Canada.
⁷ McGill University Health Centre, Montreal, QC, Canada.
⁸ Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
⁹ Nursing and Health Sciences, University of New Brunswick, Saint John, NB, Canada.
¹⁰ Department of Pediatrics, Faculty of Medicine, University of Ottawa and Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
¹¹ CHU Mère-Enfant, Sainte Justine Hospital, Montreal, QC, Canada.
¹² Department of Medicine, Faculty of Medicine, McGill University, Montreal, QC, Canada.
¹³ Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, Netherlands.
¹⁴ Centre of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.

PMID: 38192636
PMCID: PMC10773791
DOI: 10.3389/fresc.2023.1305084

Abstract

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

Keywords: advocacy; disabilities; equity; healthcare transition; human right; patient-oriented research; policy; youth and families.

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Conflict of interest statement

JWG and JM received research grants from the Canadian Institutes of Health Research Strategy for Patient-Oriented Research, and JWG held the Scotiabank Chair in Child Health Research during the duration of this study. BG, LN, SS, and AV-DL were paid for their work as project staff members. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

References

1. Martinez YJ, Ercikan K. Chronic illnesses in Canadian children: what is the effect of illness on academic achievement, and anxiety and emotional disorders? Child Care Health Dev. (2009) 35(3):391–401. 10.1111/j.1365-2214.2008.00916.x - DOI - PubMed
1. Perrin EC, Newacheck P, Pless IB, Drotar D, Gortmaker SL, Leventhal J, et al. Issues involved in the definition and classification of chronic health conditions. Pediatrics. (1993) 91(4):787–93. 10.1542/peds.91.4.787 - DOI - PubMed
1. Human Resources and Skills Development Canada. Disability in Canada: A 2006 Profile (2006). Available at: https://publications.gc.ca/collections/collection_2011/rhdcc-hrsdc/HS64-... (Cited September 25, 2023).
1. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the society for adolescent medicine. J Adolesc Health. (1993) 14:570–6. 10.1016/1054-139X(93)90143-D - DOI - PubMed
1. Children’s Healthcare Canada. Health Hub in Transition (2021). Available at: https://www.transitionhub.ca/ (Cited March 31, 2021).

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A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada

Affiliations

A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada

Authors

Affiliations

Abstract

Conflict of interest statement

References

LinkOut - more resources

Full Text Sources