Abstract
SummaryFour focus groups were conducted with members of the public to identify important areas for future osteoporosis research. Participants identified priorities to increase public awareness of osteoporosis, reduce delays in diagnosis, improve communication between healthcare providers and to improve follow-up and information provision about causes of osteoporosis, medication harms and prognosis.PurposePatients and the public must be involved in setting research agendas to ensure relevant and impactful questions are prioritised. This study aimed to understand what people living with osteoporosis and fragility fractures felt was important to research, to inform the content of a national survey on research priorities in this area.MethodsFocus groups were conducted with members of the public with experience of osteoporosis or fragility fractures. The topic guide was co-developed with a patient and public involvement research user group, and explored participants’ experiences of osteoporosis including diagnosis, management and effect upon their lives, what aspects of their ongoing care was most important to them and what about their care or condition could be improved. Focus groups were audio-recorded, transcribed and analysed thematically.ResultsA total of twenty-three participants were recruited to four focus groups. Analysis identified two main themes: challenges in living with osteoporosis and healthcare services for osteoporosis. Information needs was a further cross-cutting theme. Participants called for increased public awareness of osteoporosis and wanted healthcare services to address conflicting messages about diet, exercise and medication. Participants described long delays in diagnosis, poor communication between primary and secondary care and the need for structured follow-up as important areas for future research to address.ConclusionThe findings from this study provide an understanding of research priorities from the perspective of patients and the public, have informed the content of a national survey and have implications for patient education, health services research and policy.
Highlights
IntroductionOsteoporosis accounts for approximately 9 million fractures annually [1]
Worldwide, osteoporosis accounts for approximately 9 million fractures annually [1]
A total of 19 participants reported having a diagnosis of osteoporosis and 14 reported sustaining a previous fragility fracture
Summary
Osteoporosis accounts for approximately 9 million fractures annually [1]. The global incidence of osteoporotic fractures is predicted to increase. Low trauma fractures are associated with reduced physical function, impaired mobility, loss of independence and increased mortality risk [2], costing the UK an estimated £4.4 billion per annum [3]. Evidence-based treatments are recommended by UK guidelines for patients with osteoporosis (underlying bone fragility) and/or high fracture risk [4]. 49% of women do not receive pharmacological treatment following a 89 Page 2 of 10. Arch Osteoporos (2020) 15: 89 fragility fracture. This osteoporosis care gap has been described by experts as the “osteoporosis crisis” [5,6,7]
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