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Open Access 01-05-2020 | Osteoporosis | Original Article

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

Authors: S. N. Morin, M. Djekic-Ivankovic, L. Funnell, L. Giangregorio, I. B. Rodrigues, R. Ridout, S. Feldman, S. Kim, H. McDonald-Blumer, G. Kline, W. E. Ward, N. Santesso, W. D. Leslie

Published in: Osteoporosis International | Issue 5/2020

Abstract

Summary

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.

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Title: Patient engagement in clinical guidelines development: input from > 1000 members of the Canadian Osteoporosis Patient Network
Authors: S. N. Morin
M. Djekic-Ivankovic
L. Funnell
L. Giangregorio
I. B. Rodrigues
R. Ridout
S. Feldman
S. Kim
H. McDonald-Blumer
G. Kline
W. E. Ward
N. Santesso
W. D. Leslie
Publication date: 01-05-2020
Publisher: Springer London
Keywords: Osteoporosis
Osteoporosis
Published in: Osteoporosis International / Issue 5/2020
Print ISSN: 0937-941X
Electronic ISSN: 1433-2965
DOI: https://doi.org/10.1007/s00198-019-05248-4

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

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

Abstract

Summary

Introduction

Methods

Results

Conclusions

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Abstract

Summary

Introduction

Methods

Results

Conclusions

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