A Guideline for Transition from Paediatric to Adult Care

Last modified by Lisa Stromquist on 2017/07/12 17:35

A Guideline for Transition From Paediatric to Adult Health Care for Youth with Special Health Care Needs:  

A National Approach

CAPHC Transitions Community of Practice 

June 2016

Citation:  Canadian Association of Pediatric Health Centres (CAPHC), National Transitions Community of Practice (2016). A Guideline for Transition From Paediatric to Adult Health Care for Youth with Special Health Care Needs: A National Approach http://ken.caphc.org/xwiki/bin/view/Transitioning+from+Paediatric+to+Adult+Care/A+Guideline+for+Transition+from+Paediatric+to+Adult+Care

Disclaimer

This Guideline represents the views of the CAPHC Transitions CoP and was prepared after careful consideration of the available evidence as well as a consensus building process.  The Guideline does not override the responsibility of individuals and organizations to make decisions and provide the most appropriate care to children, youth and emerging adults in consultation with the patient and family/guardian.

Download the Full Guideline PDF

Executive Summary

Advancements in medical treatment and technology have increased the life expectancy of children with special health care needs, the majority of whom are now living into adulthood. This means a greater number of youth with special health care needs (YSHCN) are transferring to adult care, placing more demand on adult specialists to treat individuals with childhood onset conditions despite minimal knowledge and training with respect to these conditions 1. Therefore, there is an increased need for planned programs for transition of youth with special health care needs from the paediatric system to adult health services.

Currently, there is limited literature that defines and identifies transition practices that produce positive outcomes. However, there is a significant amount of qualitative data available on the patient, parent and health care provider perceptions of barriers to successful transition2 and a growing pool of quantitative data reflects poor clinical outcomes post transfer 3,4

To address these issues, in January 2012, the Canadian Association of Paediatric Health Centres (CAPHC) established a national Community of Practice (CoP) in Transition from Paediatric to Adult Health Care.  While ensuring engagement of multiple stakeholders and a national approach, the CoP developed: A Guideline for Transition from Paediatric to Adult Health Care for Youth with Special Health Care Needs. Herein referred to as the Guideline, this document includes 19 recommendations to enhance and guide the care of YSHCN through adolescence into adulthood. Practice recommendations are based on published evidence as well as stakeholder consultation through a consensus building set of surveys. When possible, we adhered to the AGREE II 5 framework for development of practice guidelines. more...   

Guideline Development Group

Glossary of Terms

Introduction to Transition

There is an increased need for direction in the development of programs for the transition of YSHCN from the paediatric system to adult health services as a result of various emerging concerns and barriers in this field. These barriers include the psycho-social concerns of adolescents and young adults with special health care needs; documented by outcomes related to poor transfer experiences and changes in health care environments. more...

Guideline Development Methodology

Guideline Development Members - Community of Practice (CoP)

The Guideline and recommendations were developed through CAPHC’s national CoP. Communities of Practice are defined as “a type of informal learning organization”38,39. CoPs are established in order to address a certain issue and bring together people from different backgrounds and professions. These people share concerns, problems and a passion about a specific issue. The concept of CoP is shaped by three dimensions. The first dimension is mutual engagement which describes the social interaction between individuals in order to create a shared meaning. The second dimension is called joint enterprise and refers to the process of people working together towards one goal. Lastly, shared repertoire which is based on the use of common resources during the process of decision making38. Finally, while CoPs are an evolving concept, four key characteristics of CoPs: social interaction, knowledge sharing, knowledge creation and identity building exist 39. more...

The Guideline for Transition from Paediatric to Adult Health Care

Purpose and Scope of Guideline

This Guideline was developed to address the CoPs’ definition of transition as a purposeful, planned movement of adolescents with chronic medical conditions from child-centered to adult-oriented health care 8 that is supported by individualized planning in the paediatric and community settings, and results in a coordinated transfer of care and secure attachment to adult services. As such, the objective of the Guideline is to support a successful transition framework from paediatric to adult care that results in individuals who are better equipped to navigate the system and better able to manage their own health.
These five key questions influenced the development of subsequent recommendations: 

  1. What are the key components necessary for a successful transition/transfer? 
  2. How can clinicians support families and youth through the transition process?
  3. How can the system support clinicians in providing a successful transition process?
  4. How do we know when a clinical group or system has adopted and integrated transition/transfer processes?
  5. How do we evaluate and monitor a successful transition?

Aims

  1. To influence transitioning at the person- and clinical-level, prompting change over time to the system level; 
  2. To provide a framework for a supportive process for transitioning from paediatric to adult health services; and  
  3. To identify collaborative processes, tools and resources for all stakeholders in the transition of youth to adult healthcare.

Target Population

Youth (aged 12 to 25 years) with special health care needs including physical, developmental and/or mental health conditions, and their families, requiring ongoing health surveillance and care to maintain optimal health into their adult years. 

Target Users

This Guideline is aimed at the professional groups, allied health providers, families and caregivers who are involved in the care and transitioning of YSHCN.  This Guideline is to be integrated into all areas of health care practice and policy; paediatric and adult, tertiary and community hospitals, rehabilitation, community and homecare services, administration and research. 

Guideline Recommendations

Implementation and Evaluation of Transition Programs

In this section, we first review resources that can be used in the development or implementation of recommendations. Next, a summary of the current state of affairs in the transition field is provided, with a focus on key reviews, challenges in conducting research as it relates to outcomes, and newly emerging frameworks to better support outcome related studies. more...  

Transition Tools, Resources and Program Websites 

Next Steps

As dissemination of the Guideline is underway across Canada, the Transitions CoP’s work will continue in key areas, including:

  1. National dissemination of the Guideline through a multipronged approach, including electronic channels, use of Transition CoP champions, incorporating both a bottom-up (users) to top-down (organizational) approach.
  2. Attention will be on increasing awareness and membership for the CoP (in particular for youth, family and adult-provider stakeholders). 
  3. Supporting opportunities for knowledge exchange as it relates to implementation of recommendations through formal and informal channels. The CoP model allows for input of all stakeholders in both knowledge creation and sharing in this domain.
  4. Ongoing contribution to knowledge exchange via recurrent updates to the repository of information (programs, tools and resources) in our Transitions Tools and Resources online inventory. 
  5. Promoting research collaborations across sites and disciplines to better support the transition for Canadian YSHCN through evaluation of outcomes and processes. In particular, the next generation of research needs to address current challenges with small sample sizes, non-generalizability due to diagnosis specific studies, inclusion of youth with medical complexity, and limited number of randomized control trials. Evaluation of implementation must also be a significant focus of newly developing research initiatives.
  6. Involve Accreditation Canada in this quality improvement initiative for transition.

CLICK HERE TO VIEW THE LATEST PRESENTATIONS IN TRANSITIONS

CLICK HERE TO ACCESS THE IMPLEMENTATION STRATEGY TOOLKIT  This toolit focuses on implementing best practice resources in a healthcare setting. This toolbox can be used to find theories, frameworks, strategies and practical tools from the knowledge translation (KT) literature to move recommendations into practice

Created by Lisa Stromquist on 2012/11/29 16:20