People With Lived Experience at the Centre of Canadian Stroke Best Practice Recommendations: A Model for Guideline Developers

Actively engaging people with lived experience (PWLE) in stroke-related clinical practice guideline development has not been effectively implemented. This pilot project evaluated the feasibility, perceived value, and effectiveness of the Community Consultation and Review Panel (CCRP), a new model to engage PWLE in the writing and review of Canadian Stroke Best Practice Recommendations. Responses to a standardized evaluation tool indicated that participants perceived the CCRP as valued, impactful, effective, and beneficial to stroke care. This project successfully demonstrated that values, experiences, and recommendations of PWLE can be effectively incorporated into guideline content and is applicable to all guideline development processes.

Identification and Recent Approaches for Evaluation and Management of Rehabilitation Concerns for Patients with Freeman–Burian Syndrome: Principles for Global Treatment

Freeman–Burian syndrome, formerly Freeman–Sheldon syndrome, is a rare congenital complex myopathic craniofacial syndrome that frequently involves extremity joint deformities, abnormal spinal curvatures, and chest wall mechanical problems that, together with spinal deformities, impair pulmonary function. As part of a clinical practice guideline development, we evaluated 19 rehabilitation-related articles from our formal systematic review, and from these and our experience, we describe rehabilitation considerations. Research in this area has widespread methodologic problems. While many challenges are present, much can be done to afford these patients a good quality of life through careful planning.

People with lived experience at the centre of Canadian Stroke Best Practice Recommendations: A model for guideline developers

Background Actively engaging people with lived experience (PWLE) in stroke-related clinical practice guideline development has not previously been implemented and evaluated despite international efforts to incorporate patient and public engagement. The purpose of this pilot project was to evaluate the feasibility, perceived value and effectiveness of a new model, the Community Consultation and Review Panel, to actively engage PWLE in the writing and review of Canadian Stroke Best Practice Recommendations (CSBPR).Methods Members of the public with lived experience relevant to CSBPR module topics, including people with stroke, family members and caregivers, were recruited to participate in two CSBPR Community Consultation and Review Panels (CCRP). The CCRP ran in parallel to scientific writing groups updating two components of the CSBPR Rehabilitation, Recovery and Community Participation module – Rehabilitation and Recovery following Stroke and Transitions and Community Participation following Stroke . With the aid of an inter-group liaison, both the scientific writing group and CCRP reviewed the updated evidence and CCRP participants added insights and context based on their personal experiences. We utilized the Patient and Public Engagement Evaluation Tool (PPEET) to obtain CCRP participant feedback.Results This model was found to be feasible, requiring 3-4 hours of staff time per week. CCRP participants rated “strongly agree” or “agree” to 14 PPEET questions indicating that they perceived the CCRP to be a positive experience and effective process, and their participation had an impact. Responses to the open-ended questions revealed that CCRP participants felt that their input and recommendations on the CCSPR were acknowledged and would benefit stroke care in Canada.Conclusions The overall success of this pilot project established the feasibility and perceived benefit of employing a participatory and collaborative model to actively engage PWLE in stroke-related clinical practice guideline development. The values, experiences and recommendations of PWLE were able to be effectively incorporated into CSBPR content to enable lived experience specific context and considerations to augment the existing scientifically rigorous writing and review process. This model is now the standard practice for all future CSBPR module development and updates and could be adapted for guideline development across other disciplines.