PATIENT PRIORITIES IN OSTEOPOROSIS RESEARCH: GENERATING MEANINGFUL RESEARCH QUESTIONS

Hawarden, Ashley; Jinks, Clare; Mahmood, Waheed; Gwilym, Stephen; Paskins, Zoe

Abstract

Background: We have previously conducted a national e-survey to identify patient and public research priorities in osteoporosis. The e-survey identified broad topics as research priorities rather than research questions. Translating research priority topics into research questions that can be used by researchers and funders is required. We aimed to use free text responses from the e-survey to generate specific research questions within broad priority topics, and identify any new themes not covered by the survey questions.

Methods: The e-survey, emailed to approximately 16,000 National Osteoporosis Society supporters, included a free-text question ‘Is there anything else you would like to tell us about what is important for research in osteoporosis?’. Using a combined inductive and deductive approach, free text entries were coded, using thematic analysis and informed by the existing survey topics by two researchers. Research questions were identified from the free text within the three highest ranking topics identified in the e-survey.

Results: 575 of the 1,088 survey respondents entered free text comments which were analysed. Comments were coded to 33 of the 40 survey topics and one additional theme was identified. Research questions relating to ‘drug treatment’ were: how safe are bisphosphonates? (including what is the risk of osteonecrosis of the jaw/atypical fractures and what drug interactions exist); how effective are bisphosphonates, HRT or progesterone cream? what is the comparative effectiveness of HRT vs bisphosphonates, oral vs intravenous bisphosphonates and bisphosphonates vs non-pharmacological treatment? what is the optimal duration of bisphosphonates? and what are predictors of response to treatment? Research questions relating to ‘early identification and screening’ were: what is the utility of routine DXA? which specific risk factors should be targeted for screening? what alternative methods of screening exist for impaired bone health? (including questionnaires, blood tests, height measurements); and how can vertebral fractures be identified early? Research questions relating to improving ‘advice and information from health professionals’ were: how can explanations be optimised? (specifically relating to DXA results, prognosis, non-pharmacological management and moving safely); what is the best support and information for younger people with osteoporosis, men with osteoporosis, and people with spinal fractures? how can awareness and knowledge of osteoporosis be optimised among primary care clinicians and care home staff? Additionally, one new theme emerged from the analysis: implementing evidence-based care. Respondents voiced concern about the dissemination of best available evidence to non-specialist medical practitioners and inconsistencies in standard care across the UK.

Conclusion: This study adds to the existing published work by expanding broad research themes and identifying patient driven research questions. In order to inform research strategies further work is needed to review existing literature and determine if these research questions are true uncertainties.

Citation

Hawarden, A., Jinks, C., Mahmood, W., Gwilym, S., & Paskins, Z. (2019, April). PATIENT PRIORITIES IN OSTEOPOROSIS RESEARCH: GENERATING MEANINGFUL RESEARCH QUESTIONS. Poster presented at British Society for Rheumatology Annual Conference 2019, The ICC, Birmingham, UK

• Presentation Conference Type: Poster
• Conference Name: British Society for Rheumatology Annual Conference 2019
• Conference Location: The ICC, Birmingham, UK
• Start Date: Apr 30, 2019
• End Date: May 2, 2019
• Deposit Date: Nov 20, 2023
• DOI: https://doi.org/10.1093/rheumatology/kez108.077
• Publisher URL: https://academic.oup.com/rheumatology/article/58/Supplement_3/kez108.077/5444262