Arch Osteoporos. 2020 Jun 16;15(1):89. doi: 10.1007/s11657-020-00766-9.
Four 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.
Purpose: Patients 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.
Methods: Focus 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.
Results: A 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.
Conclusion: The 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.