Executive Summary

Last modified by Ann Watkins on 2016/06/30 21:15

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 transition 2 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.    

The primary aims of the Guideline are:

  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.

With this national collaboration, a repository of tools and resources has been developed to support organizations and clinicians in the implementation of the recommendations in the Guideline.  Evaluating whether a purposeful, planned approach to transition improves health outcomes or experiences for the youth and their family is imperative.  Transition research is growing and numerous models of implementation and evaluation are emerging.

The CoP philosophy supports an implementation strategy, such that knowledge continues to be shared as lessons are learned and new knowledge is created.  Through this supportive network, the Guideline will be updated and improved through the continued sharing of resources, time, expertise, and research.

The following is included in this document:

  1. An introduction to the topic of transition to adult care and the unique health and psychosocial needs for YSHCN;
  2.  A brief review of the need for transition support and measurement of outcomes;
  3.  A description of the purpose and scope of recommendations, target population and users; 
  4. Information on our review and adherence to AGREE II 5, formulation and methodology of recommendations, and access to tools for further support and operation;
  5.  A summary of the literature on implementation and evaluation of transition programs; and
  6. Next steps for the Transitions CoP.

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.

Funding

The CoP is supported by CAPHC through a generous contribution from BC Children’s Hospital Foundation that pays for the coordination and management of the CoP’s activities.  The CoP members and their respective organizations have supported the Guideline development work through in kind contributions of time and expertise.

Conflicts of Interest

The Guideline was developed by a National Community of Practice facilitated by the Canadian Association of Paediatric Health Centres.  CAPHC and its member organizations have no conflicts of interest to declare.

Guideline Management

The Guideline was completed in June 2016.  Through the regular activities of the CAPHC Transitions CoP, the Guideline will be updated every three years to include new research and the inclusion of validated tools to support implementation as they become available.

External Review

The Guideline was reviewed externally by individuals (listed below) not directly involved in the development of the recommendations.

Jean Paul Collet MD, PhD - Associate Director Clinical Research, UBC Dept. Pediatrics, Director Quality and Safety Evaluation, British Columbia Children’s Hospital, Senior Scientist, CFRIt

Anna Cooper - Clinical Practice Leader/BPSO Lead Bayshore HealthCare

Nathalie Major MD, FRCPC - Medical Director, Complex Medical Care Service, CHEO, Division of Pediatric Medicine, Assistant Professor of Pediatrics, University of Ottawa

Fatma Rajwani - Quality Analyst, Clinical Practice Guideline Coordinator, The Hospital for Sick Children   

Ashleigh Townley - Knowledge Broker, Holland Bloorview Kids Rehabilitation Hospital  

References

  1. Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition From Pediatric to Adult Care: Internists’ Perspectives. Pediatrics. 2009;123(2):417-423. doi:10.1542/peds.2008-0740.
  2. Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112-120. doi:10.1542/peds.2004-1321.
  3. van Walleghem N, MacDonald C, Dean H. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care. 2008;31(8):1529-1530. doi:10.2337/dc07-2247.
  4. Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol. 2012;27(2):295-302. doi:10.1007/s00467-011-1980-0.
  5. Brouwers MC, Kho ME, Browman GP, et al. AGREE II: Advancing guideline development, reporting and evaluation in health care. J Clin Epidemiol. 2010;63(12):1308-1311. doi:10.1016/j.jclinepi.2010.07.001.
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Created by Lisa Stromquist on 2016/06/30 17:16