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Accepted for/Published in: JMIR Research Protocols

Date Submitted: May 31, 2024
Date Accepted: Jun 18, 2024
Date Submitted to PubMed: Jun 18, 2024

The final, peer-reviewed published version of this preprint can be found here:

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

Toulany A, Khodyakov D, Mooney S, Stromquist L, Bailey K, Barber CE, Batthish M, Cleverley K, Dimitropoulos G, Gorter JW, Grahovac D, Grimes R, Guttman B, Hébert ML, John T, Lo L, Luong D, MacGreogor L, Mukerji G, Pidduck J, Senthilnathan V, Shulman R, Trbovich P, Munce SEP

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

JMIR Res Protoc 2024;13:e60860

DOI: 10.2196/60860

PMID: 38889353

PMCID: 11422730

Quality Indicators for Transition from Paediatric to Adult Care for Youth with Chronic Conditions: Protocol for an Online Modified Delphi Study

  • Alene Toulany; 
  • Dmitry Khodyakov; 
  • Sarah Mooney; 
  • Lisa Stromquist; 
  • Katherine Bailey; 
  • Claire E.H 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 MacGreogor; 
  • Geetha Mukerji; 
  • Jacklynn Pidduck; 
  • Vjura Senthilnathan; 
  • Rayzel Shulman; 
  • Patricia Trbovich; 
  • Sara E. P. Munce

ABSTRACT

Background:

The transition from paediatric 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/or mental health conditions, clinical care settings, and health jurisdictions.

Methods:

Using an integrated knowledge translation (iKT) approach, a panel comprised of youth, caregivers, interdisciplinary healthcare providers, and health system leaders will be established to collaborate with our research team to ensure 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 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.

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 paediatric to adult care for youth and their families in Canada.


 Citation

Please cite as:

Toulany A, Khodyakov D, Mooney S, Stromquist L, Bailey K, Barber CE, Batthish M, Cleverley K, Dimitropoulos G, Gorter JW, Grahovac D, Grimes R, Guttman B, Hébert ML, John T, Lo L, Luong D, MacGreogor L, Mukerji G, Pidduck J, Senthilnathan V, Shulman R, Trbovich P, Munce SEP

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

JMIR Res Protoc 2024;13:e60860

DOI: 10.2196/60860

PMID: 38889353

PMCID: 11422730

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