Guideline Development Methodology

Last modified by Lisa Stromquist on 2017/05/09 19:30

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.

In January 2012, a CAPHC Community of Practice in Transition from Paediatric to Adult Health care was established.  This group of stakeholders from across the country includes front line clinicians and allied  health professionals from adult and paediatric settings, researchers, administrators from all levels of care, homecare, rehabilitation, community and tertiary hospitals, as well as other community based care settings. Most significantly, families and youth who had previously transitioned are welcomed members. The CAPHC Transitions CoP has all of the dimensions and characteristics described by Wenger et al 38.  

For a complete list of all participants and organizations in the Transitions Community of Practice (at the time of publication) click here. 

Through monthly meetings, a strong network of individuals and organizations was established to work toward the common goal of national standards to optimize the transition of YSHCN from paediatric to adult care.  Knowledge sharing occurs via formal presentations and through informal exchanges between individuals and organizations.  The sharing of resources; time, expertise, research and previously developed tools has enabled a process for guideline development at a much faster pace than a single organization can manage on its own.  The shared decision making and consensus building process has ensured the voices of all stakeholders are heard equally.

While ensuring engagement of all stakeholders, the CoP aims are: 

  1. To develop national Transition Clinical Practice Guidelines and recommendations to enhance and guide the care and health of YSHCN through adolescence into adulthood.
  2. To create strategies for sharing and implementation of transition tools, materials and resources at a national level with clear guidelines for use and collaboration.
  3. To suggest opportunities for partnerships and collaboration in providing 'best practice' standards in clinical, education, evaluation, and research. 
  4. To ensure the voice and needs of youth and young adults involved with and experiencing transition are included at each stage of development of these objectives.

This CoP model aligned interprofessional learning with integrated knowledge translation.  The Transitions CoP established a framework for decision making and determined how these decisions can be implemented in clinical practice.  Having a strong CoP supports an implementation strategy as knowledge continues to be shared, lessons learned and new knowledge created.  

The Guideline Development Group included a smaller group composed of members of the CAPHC Community of Practice for Transition from Paediatric to Adult Health Care. Members included young adults, families, health care providers, researchers and administrators from across Canada representing paediatric, adult, rehabilitation, community and mental health organizations.  The CoP met frequently, providing a forum for knowledge exchange and relationship building.

Strengths and Limitations of Evidence

The Guideline Development Group conducted a literature search for practice guidelines, global programming, policy statements, systematic reviews, and relevant research studies related to the transition to adult care from Canada, US, Australia and the United Kingdom. Medline, Cumulative Index to Nursing and Allied Health (CINAHL) and PUB Med were used to search for relevant articles (English only) using key words (adolescent, adolescence, young adult, parents, families, transition, transfer of care, health care, chronic health conditions, chronic illness, and complex care, policy statements, medical home, emerging adulthood, continuity of care, clinical guidelines and youth engagement). Results were limited to publications from 2006 to 2015 (with exceptions of foundational work of an earlier date) from primary and secondary sources. 

All evidence found in the literature was critically appraised. Specifically, the quality of evidence from each source was rated using the following scheme: 

   I Evidence obtained from one or more randomized trials with clinical outcomes;

   II Evidence obtained from research, meta-analysis, systematic review, policy statement; or

   III Expert opinion.

Of note, given the limited number of research articles with random controlled trials, our evidence body is composed of some quantitative studies, but mainly qualitative studies, reviews, case reports and systematic reviews. The literature scan and review was an ongoing process, as new articles and guiding papers were published annually.  

A quick reference guide outlining the quality of evidence scale for each recommendation is available in: Appendix 1: Quick Guide to Recommendations and Levels of Evidence.

Formulating the Recommendations

Using the literature, research and a review of 21 published transition guidelines/policy statements, guided by the experience of the working group, eight themes referred to in this document as “core domains” emerged as integral to the transition process at the individual, clinical and system levels.

   Domain 1 Youth Focused and Family Centered

   Domain 2 Youth, Family and Support Networks Engagement

   Domain 3 Documentation and Process Change

   Domain 4 Education: Building Capacity of all Stakeholders

   Domain 5 Attachment to Adult Services

   Domain 6 Roles and Care Coordination

   Domain 7 Service Planning & System Change

   Domain 8 Evaluation Strategies

Once the domains were identified, the Guideline Development Group extracted evidence statements and developed related recommendations. These recommendations were vetted by the CoP members and it was agreed that they should be evaluated by a larger group of stakeholders who were not directly involved in the recommendation development process.  To reach a broader audience, CoP members invited their networks to be part of a consensus building process.  A list of 525 individuals from across Canada, who were identified as stakeholders in the transition process, was compiled. These included youth, families, health care providers, administrators, researchers from paediatric and adult settings—in acute, community and rehabilitation settings.  The purpose of this national reach was also to ensure a Canadian-wide consensus on recommendations.

Consensus Survey Process and Results

The survey consisted of two rounds where recommendations were presented and respondents were asked to rate them with a scale ranging from Essential, Very Important, Accessory or Unnecessary.  Participants were encouraged to provide comments or suggestions for improvement to each of the statements.  In round one, an electronic-based survey was sent to the list of 525 identified stakeholders, with a total of 260 (49.5%) completed. Demographic information was collected on stakeholders including, academic degrees, current position, organization, and province at round one.

 Discipline of Participants Number of Participants
 Nursing: RPN, Bachelor, Masters 60
 Social Work 17
 Youth or Family Member 23
 Allied Health (OT/PT/RT) 13
 Education 12
BA/BSc MA/MSc  14
Business/Health Administration 9
Psychology BA/MA/PhD  7
PhD  6
 Other 4

Of note, majority of respondents were from one province and three provinces were not represented.

transition survey.png

In total, 39 recommendations were presented.  Seventy percent of the respondents agreed that five of the recommendations were Essential. When Essential and Very Important were combined all 39 recommendations were agreed on by more than 70% of participants. 

Responses were overwhelmingly positive regarding the intent of the recommendations and the goal of the work. Numerous comments were collected for each recommendation statement and the overall collection. Of concern, was that some of the recommendations were seen as overarching statements and principles. Respondents remarked that the recommendations did not provide guidance on who would be responsible for the recommendation. Finally, there was concern on the number of total recommendations with a suggestion for reduction in the total number. Consequently, the Guideline Development Group reviewed the results of the survey and reworded many of the statements to provide clarity, reduce redundancies, and attempt to address these initial concerns. This resulted in 29 recommendations.

A second survey was conducted; 149 of the original 260 (57%) individuals responded. Again five recommendations were ranked Essential by 70% of respondents.  When the scores for Essential and Very Important were combined 27 of the recommendations were agreed on by more than 70% of respondents.

The Guideline Development Group examined each recommendation, individually considering its ranking and all of the related comments and reduced the total to 19. Respecting the eight Core Domains and reflecting on the goals of the CoP the 19 recommendations were categorized as principles, clinical, system and good practice points.  These were eventually re-organized into three categories: Person Centred, Clinical and System-level recommendations. A table outlining the development of the key recommendations, as compiled from September 2013 to December 2015, is available in Appendix 2: Evidence Table for Recommendations. 

List of references reviewed to compile recommendations is available in Appendix 3: References List for Evidence Table and Recommendations. Of note, each of the references is graded as to strength of influence in writing the recommendations, using the following scale: 

A Strong influence on recommendations

   B Moderate influence on recommendations

   C Optional or used to provide general background information.


38. Wenger E. Communities of Practice: Learning, Meaning, and Identity. Cambridge: University Press.; 1998.

39. Li, L. C., Grimshaw, J. M., Nielson, C., Judd, M., Coyte, P. C. and Graham ID. Evolution of Wenger’s concept of community of practice. Implement Sci. 2009;4(11):1-8. doi:10.1186/1748-5908-4-11.

Created by Lisa Stromquist on 2016/06/30 19:48