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Lookup NU author(s): Dr Claire WoodORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025 Mountain et al. Young people with Duchenne muscular dystrophy (DMD) commonly experience osteoporosis and fractures which can lead to chronic pain and reduced quality of life. Initiating IV bisphosphonate therapy prior to first fracture may be a logical primary preventative approach given the extent and related morbidity of osteoporosis, although there is limited evidence for this. This qualitative study using semi-structured interviews and focus groups, aimed to explore the opinions and prospective acceptability of young people with DMD, parents and health professionals in the UK on initiating bisphosphonate therapy prior to first fracture. Four boys with DMD (aged 15–17 years) and 20 parents participated in semi-structured interviews. Twenty-seven health professionals involved in the care of young people with DMD participated in focus groups. A framework analysis was conducted. Three categories were identified which represented a continuum of opinions on the endorsement of preventative bisphosphonate therapy: 1) “It buys them time”, endorsement of preventative bisphosphonate therapy; 2) Uncertainty and the importance of “choice”; and 3) “Worry about... starting bisphosphonates even earlier”, not endorsing the use of preventative bisphosphonate therapy. Young people with DMD and parents discussed a range of opinions about the prospective acceptability of IV bisphosphonate as preventative therapy, highlighting the importance of family choice before initiation of therapy. Health professionals called for future research exploring the risks and benefits of preventative IV bisphosphonate therapy for young people with DMD to inform clinical practice.
Author(s): Mountain DC, Crabtree N, Wood CL, Wong SC, Bray L
Publication type: Article
Publication status: Published
Journal: PLoS ONE
Year: 2025
Volume: 20
Issue: 5
Online publication date: 02/06/2025
Acceptance date: 22/04/2025
Date deposited: 16/06/2025
ISSN (electronic): 1932-6203
Publisher: Public Library of Science
URL: https://doi.org/10.1371/journal.pone.0324124
DOI: 10.1371/journal.pone.0324124
Data Access Statement: Data cannot be shared publicly because of the ethical approval granted by Edge Hill University. Data are available from Edge Hill University (FOHSCresearch@edgehill.ac.uk) who meet the criteria for access to data. Relevant data are reported within the manuscript to enable the reader to determine interpretation.
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