For many youth with chronic health conditions, transition from paediatric to adult careis a challenging period. They experience negative health outcomes, disconnection from healthcare services, and increased rates of hospitalizations. We previously identified a large number of quality indicators to measure the quality of care during youth’s transition to adult care, however, we discovered several important gaps. These include the lack of meaningful youth and parent/caregiver engagement in indicator development, ability to use across chronic conditions, community primary care involvement, and health equity considerations. Deficiencies in these quality indicators mean that there is no universal and consistent way to measure and effectively track health system performance during transition.
STUDY OBJECTIVE:
We aim to conduct a 3-round online modified-Delphi study to determine a key set of quality indicators for transition across chronic conditions that are most important, useful, and feasible from the perspective of youth andparents/caregivers with lived experiences, specialist and primary care clinicians, and health system and community leaders/decision-makers. Using an equity lens, we will engage each knowledge user group to compare and contrast their perspectives on quality indicators for transition. Together we will establish consensus on a national key set of quality indicators that evaluate and track transition success over time, applicable across care settings and chronic physical, developmental and mental health conditions.
Our innovative and equity-focused solution will inform decision-makers on action for national health system-level evaluation of transition. Outcomes of this study will significantly impact the quality of transition care for youth and their families by identifying important target areas for quality improvement and opportunities to track and compare health system performance nationally.
Principal Investigator(s): Alene Toulany, Sarah Munce, Sarah Mooney, Lisa Stromquist
Co-Investigators: Katherine Bailey, Claire Barber, MichelleBatthish, Kristin Cleverley, Gina Dimitropoulos, Jan Willem Gorter, Michèle L.Hébert, Dmitry Khodyakov, Lisha Lo, Laura MacGregor, Geetha Mukerji, Jacklynn Pidduck, Rayzel Shulman, Patricia Trbovich
Knowledge Users: Beverly Guttman
Collaborators: Danijela Grahovac, Ruth Grimes
Integrated Knowledge Translation Panel: Amanda Higgins, Darryl Yates, Elaine Li, Kyle Chambers, Laura Williams, Marilyn Crabtree, Megan Henze, Melanie Penner, Michelle Wan, Samadhi Mora Severino, Sanober Diaz
Online Modified Delphi and Consensus Meeting
1. 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, MacGregor L,Mukerji G, Pidduck J, Senthilnathan V, Shulman R, Trbovich P, Munce SE. QualityIndicators for Transition from Pediatric to Adult Care for Youth With ChronicConditions: Proposal for an Online Modified Delphi Study. JMIR Res Protoc. 2024Sep 10;13:e60860. doi: 10.2196/60860. PMID: 38889353; PMCID: PMC11422730.
