Patient engagement in clinical guidelines development: input from > 1000 members of the Canadian Osteoporosis Patient Network

Abstract

Patient engagement in clinical guidelines development is essential. The results of a self-administered online survey identified themes important to people living with osteoporosis and will inform the development of Osteoporosis Canada clinical guidelines recommendations. Introduction Patient engagement is essential in the development of high-quality and relevant guidelines for osteoporosis management. Osteoporosis Canada (OC) is updating its national clinical practice guidelines in collaboration with people living with osteoporosis in the process. Methods Using electronic mail, we contacted 6937 members of the Canadian Osteoporosis Patient Network (COPN) to provide input on the selection of relevant content, outcomes, and research questions via a self-administered online survey. Close-ended questions were analyzed using descriptive statistics, and conventional content analysis was conducted for open-ended questions. Results A total of 1108 individuals completed the survey (97% women, 86% stated they lived with osteoporosis). Most participants considered it critical to have recommendations on physical activity and exercise (74%), fall prevention (69%), nutrition (68%), and initial bone mineral density testing (67%). In addition to preventing fractures, over 75% of respondents stated that consideration of preserving quality of life and ability to perform daily activities, preventing admission to long-term care and fracture-related death, and avoiding serious harms from medications were essential outcomes to consider in evaluating the evidence. In terms of selection of research questions, seven themes emerged from the content analysis including pharmacotherapy, screening and monitoring, diet and supplements, education, exercise, alternative therapies, and pain management. Conclusions Patients emphasized that autonomy, mobility, and quality of life are highly valued outcomes and must be integral to practice guideline development. As expected, guidance on pharmacotherapy, screening and monitoring, and fracture prevention were priorities identified to be included in osteoporosis management guidelines.

Physical fitness in older women with osteoporosis and vertebral fracture after a resistance and balance exercise programme: 3-month post-intervention follow-up of a randomised controlled trial

“…The effect of exercise on mobility as measured by the 2.45-m up and go is promising, but the magnitude of the effect was small (between-group difference of 0.38 s) and likely not clinically meaningful [ 46 ]. Maintaining physical activity and physical function is important for people with osteoporosis [ 47 ] and may prevent a cycle of physical impairment after vertebral fracture [ 1 , 8 , 48 , 49 ].…”

Protocol for a scoping review on the methods for engaging long-term care residents with dementia in research and guideline development

“…1 Many studies and organisations recognise that successful research and guideline development and implementation require the engagement of multiple stakeholders (eg, patients, clinicians and policy-makers) to improve health outcomes. [1][2][3][4] Particularly, patient engagement is essential for the development of high-quality and relevant health practice guidelines and research. [1][2][3][4][5] Patient engagement is defined by the Canadian Institutes Strengths and limitations of this study ► The scoping review will identify gaps in current methods for engaging residents with dementia in long-term care (LTC) in research and guideline development which will delineate opportunities for developing new methods in the future.…”

“…[1][2][3][4] Particularly, patient engagement is essential for the development of high-quality and relevant health practice guidelines and research. [1][2][3][4][5] Patient engagement is defined by the Canadian Institutes Strengths and limitations of this study ► The scoping review will identify gaps in current methods for engaging residents with dementia in long-term care (LTC) in research and guideline development which will delineate opportunities for developing new methods in the future. ► The scoping review will include both academic and grey literature to support improvement of patient engagement in vulnerable populations, such as those living in LTC.…”

“…Health guidelines such as those for falls prevention, pressure injury prevention or medication reconciliation contain evidence-based recommendations for health practice, public health or health policy 1. Many studies and organisations recognise that successful research and guideline development and implementation require the engagement of multiple stakeholders (eg, patients, clinicians and policy-makers) to improve health outcomes 1–4. Particularly, patient engagement is essential for the development of high-quality and relevant health practice guidelines and research 1–5.…”

A influência da atividade física para a prevenção e tratamento da osteoporose: revisão integrativa

“…É uma doença caracterizada pela diminuição da densidade mineral óssea (DMO) e deterioração da microarquitetura do tecido ósseo que induz à fragilidade e contribui, assim, para o aumento do risco de fraturas. Pessoas que vivem com osteoporose enfrentam redução da qualidade de vida e perda de mobilidade e autonomia (Morin et al, 2020). Atualmente, a osteoporose é considerada a doença osteometabólica mais comum, atinge principalmente pessoas idosas, tem uma incidência maior nas mulheres, sobretudo após a menopausa.…”