Healthcare transitions for adolescents with chronic life‐threatening conditions using a Delphi method to identify research priorities for clinicians and academics in Canada

Abstract

The results of this study can inform and prioritize a framework for an ongoing programme of research in Canada. The inclusion of clinicians and academics ensures that the research agenda incorporates perspectives from the front-line work of individuals providing care to this population as well as individuals from the academic community with important knowledge and skills related to research approaches and methods.

Key Elements for, and Indicators of, a Successful Transition: An International Delphi Study

“…Defining the key elements of transition programs that lead to better outcomes is needed to design efficient models of care [6]. Moreover, researchers point out that there are no indicators about how to characterize a transition as successful [7,8], and until it is understood how to evaluate this process as successful, it will be difficult to move research priorities forward [8]. Additionally, having indicators available should…”

Transition Care for Children With Special Health Care Needs

“…59,60 Quality-of-life and personalized outcomes identified by the adolescents participating in transition care could be significant outcome measures, but others should be developed as well. 51,52,54,61,62 In addition, few studies provided data on long-term follow-up, which could be important for considering the ultimate success of transitioning.…”

“…58 An alternative to using longitudinal studies to evaluate the impact of transition on patient outcomes and assess overall improvement in the transition process is quality improvement initiatives and evaluation designs. [66][67][68][69] Quality improvement research could help identify best practices for transition, 66 factors within transition that affect outcomes positively or negatively, 52,56,57 and individual predictors for successful transition. 52,56 Funding streams generally focus on specific diseases, but the field of transition research would benefit from more generalized research that can identify effective methods across disease groups.…”

“…These studies would therefore need to be long and thus may be cost-prohibitive. 52,58,64,65 One method to obtain prospective data for evaluation of transition would be the development of disease-specific or location-specific core transition data sets that could be used for research of the transition process over the short and long terms. 58 An alternative to using longitudinal studies to evaluate the impact of transition on patient outcomes and assess overall improvement in the transition process is quality improvement initiatives and evaluation designs.…”

“…The lack of well-defined outcome measures is a major barrier. [51][52][53][54] Future methodologic research should focus on identifying or developing objective measures of successful transition as well as transition tools. 59,60 Quality-of-life and personalized outcomes identified by the adolescents participating in transition care could be significant outcome measures, but others should be developed as well.…”