RESUMO
Introduction: The Consortium for Spinal Cord Medicine's inaugural Clinical Practice Guideline for Bone Health and Osteoporosis Management for Individuals with Spinal Cord Injury or Disease (CSCM-CPG) was published in 2022 for a clinician audience. The aim of this project was to develop a podcast series to ensure people with lived experience with Spinal Cord Injury or Disease (PLEX) understand the CSCM-CPG content and know how to act to reduce their fracture risk. Methods: The "Bare Bones Podcast Series" consists of nine episodes; one related to each CSCM-CPG chapter. The podcast content and the questions asked in each podcast were co-developed by PLEX partners (PLEX-P) and the project team. Two PLEX-P acted as co-hosts for the series. The invited speaker(s) were CSCM-CPG expert panel members who participated in an informal dialogue with the hosts. Each podcast closes with a specific action a listener can do to advance their bone health. The related Educational Action Planning Tool (EAT) handouts contain text and infographic information specific to each podcast episode and include key concepts and a specific actionable take-home message. Local PLEX reviewers (PLEX-R) were invited to review podcast episodes and EATs and provide their feedback through focus group participation or one-on-one (1:1) interviews. The project team revised the podcast episodes and the EATs based on feedback from the PLEX-R prior to releasing them online. Results: Nine podcast episodes and related EATs were designed and created collaboratively with 3 PLEX-P, 22 PLEX-R, 11 CSCM-CPG expert panel members, and the project team. The episodes were titled: "Introduction to the Bare Bones of Bone Health"; "Fracture 101"; "Blood Tests-a Window into You"; "I See Your Skeleton"; "Vitamin D for all, Calcium for Some"; "Get Moving and Loading"; "Pills or Poisons & Atomic Habits"; "Snap and Crack"; and "Directions for Research". The Bare Bones Podcast Series was shared through the project website. Conclusions: The podcasts will aid PLEX and their family caregivers to advocate for ongoing bone health assessments and to promote an ongoing dialogue with care team members regarding how to prevent fractures and fracture-related morbidity and mortality.
RESUMO
PURPOSE: The Rehabilitation Interventions for Individuals with a Spinal Cord Injury in the Community (RIISC) team aimed to develop and evaluate innovative rehabilitation interventions to identify endocrine metabolic disease (EMD) risk, intending to reduce the frequency and severity of EMD related morbidity and mortality among adults living with chronic spinal cord injury or disease (SCI/D). MATERIALS AND METHODS: An interprovincial team from Ontario and Quebec reviewed available EMD literature and evidence syntheses and completed an inventory of health services, policies and practices in SCI/D care. The review outcomes were combined with expert opinion to create an EMD risk model to inform health service transformation. RESULTS: EMD risk and mortality are highly prevalent among adults with chronic SCI/D. In stark contrast, few rehabilitation interventions target EMD outcomes. The modelled solution proposes: 1) abandoning single-disease paradigms and examining a holistic perspective of the individual's EMD risk, and 2) developing and disseminating practice-based research approaches in outpatient community settings. CONCLUSIONS: RIISC model adoption could accelerate EMD care optimization, and ultimately inform the design of large-scale longitudinal pragmatic trials likely to improve health outcomes. Linking the RIISC team activities to economic evaluations and policy deliverables will strengthen the relevance and impact among policymakers, health care providers and patients.
Living with a spinal cord injury or disease (SCI/D) increases endocrine metabolic disease (EMD) risk.EMD-related outcomes include fracture; type II diabetes; and cardiovascular disease (myocardial infarction, sudden cardiac death and stroke), directly contributing to higher morbidity and mortality.Single-disease paradigms are not the ideal strategy to address multimorbidity contexts experienced in SCI/D.Practice-based research could be an alternative/adjunct to randomized control trials at generating evidence on current and emerging rehabilitation approaches.