Our Approach

Here are the steps that the CAN-PCC project team followed to prioritize topics:

1. Conduct a Scoping Review:
   The CAN-PCC project team put together a comprehensive list of potential PCC topics, health conditions, and affected populations based on a scoping review of published literature on PCC.
2. Consultation with Interested Participants for Brainstorming and Generation of Priority Topics:
   The team held brainstorming sessions during a project kick-off meeting with interested participants (i.e. patients, clinicians, researchers) to obtain input, add to the list of potential topics, refine and label topics, and clarify priority areas. At the end of the brainstorming sessions, a preliminary list of six topics was organized according to the top priorities and reviewed with the participants.
3. Public Consultation Survey:
   The CAN-PCC project team developed and shared an online survey with the public to get their feedback about the suggested six guideline topics, identify any missing priority topic areas, and begin brainstorming potential guideline questions for the six topic areas.
4. Final Approval:
   The CAN-PCC Guideline Development Group reviewed the public feedback from the survey, identified subtopic areas of priority, and gave final approval of the six guideline topics.

Scoping Review

To inform discussions on potential topics, guideline questions, PCC definitions, and target populations, we mapped and identified existing literature by conducting a scoping review. This review included a range of sources for the search, including Epistemonikos, the Cochrane Library, the World Health Organization’s COVID-19 Research database, the COVID-19 Evidence Network to support Decision-making (COVID-END) database, and the PCC Recommendations Map of Canada’s Drug and Health Technology Agency (CADTH).

We conducted the searches with help from research librarians. We included and extracted information from 24 published scoping reviews related to PCC, 37 systematic reviews focusing on the prevalence of health conditions and symptoms associated with PCC, and 34 published health guidelines addressing COVID-19 and PCC.

We extracted information to address our scoping review questions and reported: 1) a list of health conditions and symptoms experienced by individuals with PCC; 2) the prevalence data reported for these health conditions and symptoms; 3) a list of populations and population subgroups that were reported to be affected by PCC; and 4) an overview of interventions that have been evaluated in research studies for persons who have PCC, or are at risk of PCC.

Consultation with Interested Participants in Project Kick-off Meeting

Using the information from the scoping review as a basis for participant input, we conducted a two- day project kick-off workshop and engaged in small and large group discussions with approximately 110 individuals from interested groups, including members from the Canadian public, people with lived PCC experience, clinicians, and Canadian and international research collaborators. Through this collaborative exercise, which was facilitated by guideline methodologists, participants brainstormed and discussed priority topic areas, topics were organized and refined, and finally six priority guideline topics were identified: (1) Prevention of PCC, (2) Testing, Identification, and Diagnosis related to PCC, (3) Pharmacological and Non-pharmacological Clinical Interventions for PCC, (4) Neurological and Psychiatric Topics, (5) Pediatric and Adolescent Topics, (6) Healthcare Services and Systems, and Social Supports.

Public Consultation Survey

We captured many opinions and insights by conducting an online public consultation survey to assess agreement or disagreement with each of the suggested topics from the project kick-off workshop and invited suggestions for any missing priority areas. The survey was provided in both English and French with targeted promotion in all regions across Canada to ensure that the voices of a diverse range of individuals were heard and considered.

The survey covered four areas of feedback: 1) express agreement or disagreement on a 7-point Likert scale regarding whether each of the 6 topics should be prioritized in the CAN-PCC guidelines; 2) open-text responses to provide comments or insights regarding the suggested topics; 3) highlight any potential gaps or aspects that may not be adequately addressed within the proposed topics; 4) suggest potential guideline questions, which will be used in a next step following topic prioritization.

We analyzed survey responses from 1037 respondents, evaluating proportions of agreement and disagreement with the six topic areas. The survey results highlighted important subtopic areas to cover within the six guideline topics (e.g. multimodal care, transitions in care, work accommodations and special considerations, complementary, alternative and holistic treatments, virtual care) but did not suggest that the six candidate topic areas were not a priority or that any priority topics were missing.

Final review and approval by the Guideline Development Group (GDG)

The Guideline Development Group (GDG), an overarching decision-making group for CAN-PCC, reviewed and discussed the public consultation survey results, complied lists of comments, and suggestions. Based on this information, the GDG highlighted subtopic areas and populations that should be a focus across the guidelines. Following the group discussion, the GDG members responded individually to an online survey to indicate whether they agree or disagree to confirm the final topics. Agreement was received from all GDG members to proceed with the six topics for the CAN-PCC guidelines.

The Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) team developed 11 Good Practice Statements (GPS) as a first step in the guideline development process. Here, we provide a brief overview of the key steps and considerations that were used for GPS development:

The members of the Guideline Development Group (GDG) and the six Guideline Teams (GTs) received training in the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to develop GPS (see our Resources page for the methodology articles).

In summary, the framework for developing a GPS includes the following 5 criteria:

1. The message is necessary in healthcare practice.
2. Implementing the GPS results in a large net-positive consequence after consideration of all relevant outcomes and potential downstream consequences.
3. Collecting and summarizing the evidence is a poor use of a guideline panel’s limited time, energy, or resources. The opportunity cost of collecting and summarizing the evidence is large and can be avoided.
4. There is a well-documented clear and explicit rationale connecting the indirect evidence.
5. The statement is clear and actionable.

• The GDG and GT members provided their declaration of interest (DOI) for independent assessment regarding relevant potential conflicts of interest (COI) by the Association of the Scientific Medical Societies in Germany (AWMF) using the COI policy. For these initial 11 GPS, the COI assessments addressed relevance for the specific GPS under consideration.
• The GTs drafted statements that met GPS criteria and were deemed important to promptly share with persons with lived PCC experience, health care professionals and care providers, policymakers, and the Canadian public.
• The draft GPS underwent a public comment period through an online survey, in English and French, which was shared with the Canadian public, as well as various Federal, Provincial and Territorial organizations and interested participants, and international collaborators. The survey collected feedback with respect to any concerns with the draft GPS, and suggestions for improvement.

The GDG discussed and together with the Guideline Teams made modifications to the GPS based on key issues identified form the feedback, including:

• • Improvements in plain language use and consistent terminology across GPS, including for French language versions.
  • Ensuring health equity considerations were adequately and consistently incorporated in the GPS.
  • Keeping GPS and remarks concise to enhance uptake. More detailed relevant information, for example for implementation of the GPS, is available in the complete online GPS frameworks linked in the GPS and Recommendations List and Map.
  • Ensuring that it was explicitly mentioned who should take the action, for example ‘health care professionals’ or ‘health educators’.
  • Not focusing on domain-specific symptoms, such as neurological and cognitive changes, but addressing symptoms associated with PCC that cause limitations in daily activity. Specific symptoms will be addressed in upcoming formal recommendations.
  • Not focusing on specific management options, but for example addressing the ‘plan of care’. Specific management options will be addressed in upcoming formal recommendations.

Final drafts of the GPS frameworks and statements provided by the Guideline Teams received approval for publication by the GDG.

Members of the CAN-PCC Collaborative, including the Guideline Development Group (GDG) and the six Guideline Teams (GTs,) submitted Declaration of Interest (DOI) forms to the Association of the Scientific Medical Societies in Germany (AWMF), which served to conduct an independent assessment of potential conflicts of interest (COI) for the CAN-PCC guidelines project. Both financial and non-financial disclosures were assessed following principles set out by the Guidelines International Network.

AWMF assessed potential COI at both the guideline topic and guideline question level. Upon assessment of disclosures, potential conflicts were classified as none, low, moderate, or high. Individuals with no COI had no limitations placed on their capacity as a member or leader of a guideline group. Individuals with low COI were not permitted to serve in a leadership capacity as guideline group co-chairs, but could otherwise participate fully in guideline development. Individuals with moderate COI were recused from making judgements or voting on recommendations on topics related to their COI, in addition to the limitations in place for those with low COI. Individuals with high COI were restricted from participating in discussions and making judgements or voting on recommendations related to their COI, in addition to the limitations in place for those with low and moderate COI. The assessed conflicts are reported for each GDG and GT member for all recommendations on the CAN-PCC RecMap. For additional details the full COI policy can be viewed here.