Provision of Health Information to Australians With Polymyalgia Rheumatica: Patient Recall and Perceived Opportunities for Improvement.

Abstract

Background: Most patients with polymyalgia rheumatica (PMR) are managed in primary care. Provision of health information to patients on management strategies and potential side effects is important given the complexity of this condition. This study aimed to describe the recall of information of people with PMR in receiving information from their treating doctor and their perceived need for further information.

Methods: Data were taken from a survey between September and November 2024 characterising the presentation and experiences of Australians with PMR collected from an online patient support group. Reported data included recall of provision of information from their treating doctor on aspects of management strategies including pain management, medication side effects, fatigue management and physical activity. Free responses regarding areas of further information desired were provided and thematically analysed.

Results: One hundred and forty nine individuals participated in the online questionnaire. Information received on pain management (80.7%), maintaining bone strength (75.7%) and remaining physically active (79.7%) were the topics most recalled by respondents. Information related to fatigue (50.0%), fitness and strength (50.5% and 52.3%) and activity modification (49.1%) were less likely to be recalled. Thematic analysis of free responses revealed a desire for more specific guidance with regard to activity participation and exercise, medication side effects, balancing activity and pain and access to other sources of information.

Conclusion: The majority of people with PMR recall receiving information about their condition from their treating doctor but seek further and more specific advice regarding aspects of managing their pain and function. Collaborative opportunities exist to supplement care with other health professionals.