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.

1. Introduction

Polymyalgia rheumatica (PMR) is the most common rheumatological condition affecting people over 50 years of age (O'Brien, Liddle, et al. ²⁰¹⁹; Weddell et al. ²⁰²²). Characterised by pain and stiffness in the proximal regions, particularly in the shoulder and hip girdles (Toyoda et al. 2024; Weddell et al. ²⁰²²), this condition is associated with marked functional limitation, fatigue and generalised arthralgia (Toyoda et al. 2024).

The majority of patients with PMR are managed in primary care where initial treatment usually comprises glucocorticoid therapy (Dejaco et al. 2015; Fors et al. ²⁰¹⁹; Toyoda et al. ²⁰²⁴; Tshimologo et al. ²⁰¹⁸). Published guidelines for the management of PMR also recommend the inclusion of non‐pharmacological interventions, which include education focusing on the impact of PMR and its treatment and individualised exercise aimed at the maintenance of muscle mass and function and the reduction of falls risk (Dejaco et al. 2015).

The delivery of accurate health information is the key to patient understanding in any health condition including PMR, yet the delivery of information is suggested to vary across practitioners (Tshimologo et al. 2018). Given that the presentation of PMR may be heterogenous including distal in addition to proximal musculoskeletal manifestations and systemic symptoms including fever and weight loss, and its diagnosis complex (Dasgupta 2010; Twohig et al. ²⁰¹⁵) together with its chronic nature and potential for adverse events during its course (Tshimologo et al. 2018), patient understanding of their condition and treatment is central to management and the prevention of complications.

The purpose of this report is to describe the experiences of people with PMR in receiving information about their condition from their treating practitioners and detail areas of perceived need for further information by patients.

2. Methods

The study utilised a cross‐sectional design. A 53‐item questionnaire was developed. The questionnaire was distributed over a 3‐month period using the online platform QuestionPro (QuestionPro Inc., Austin, TX). Ethical approval for this study was granted by the University of Newcastle Human Research Ethics Committee (approval H‐2024‐0141).

2.1. Study Participants

The questionnaire was posted on the Facebook patient support group page Polymyalgia Rheumatica Support Group Australia, a support platform available to individuals with polymyalgia rheumatica. Individuals who were members of this patient support group were invited to participate.

To be eligible to complete the questionnaire, individuals were required to confirm that they were over the age of 18, be resident in Australia and that the diagnosis of polymyalgia rheumatica had been provided by a medical practitioner such as a rheumatologist or their family doctor. Individuals without a formal diagnosis were excluded from the study.

2.2. Questionnaire Development

The survey instrument was developed following a review of relevant literature published in the area of polymyalgia rheumatica and related conditions. The resultant questionnaire recorded information derived from a combination of patient self‐reports regarding their experience of the condition and its management and administration of validated instruments to measure related domains. These domains included overall health status, pain, health related quality of life, fear avoidance, fatigue, self‐efficacy, depression and anxiety. Demographic information recorded included respondent age, gender, level of education and work status. The questionnaire utilised both open and closed questions and checklist responses as appropriate to the questionnaire item.

The questionnaire was refined following a process of examining face and content validity by practitioners other than the researcher who were invited to comment on the completeness of domains examined and express an opinion on the capability of the questionnaire to reflect relevant knowledge and opinions. The questionnaire was also reviewed by a convenience sample of individuals with rheumatic conditions to clarify feasibility and language acceptability.

For the purpose of this report, findings related to advice received from medical practitioners and respondents reporting of further information they wish to receive about their condition and management are presented. Respondents were asked to recall whether they had received advice from their treating medical practitioner with regard to specific aspects of their disease presentation and care. These included pain management, physical activity and movement, strength and fitness, fatigue and energy conservation, bone strength and steroid use and activity modification.

Free text options were provided to respond to open‐ended questions asking about what further information participants wished to know with regard to physical activity, improving daily function and specific exercise to assist in the management of their condition. Free text responses were inductively coded by a single researcher, with codes revised if necessary on subsequent coding rounds to ensure consistency. Codes were grouped into broader themes for the purposes of meaning and interpretation. Reflective notes were used throughout this procedure to improve transparency and reflexivity.

2.3. Statistical Analysis

Descriptive analysis including count, percentages, range, mean, standard deviation/median and interquartile range were used to describe the study participants and their responses to dichotomous questions. Free text responses were manually coded and consolidated into themes.

3. Results

One hundred and forty‐nine individuals participated in the online questionnaire. People identifying as female comprised the majority of respondents (n = 134 (89.93%)). Diagnosis of PMR was reported by a rheumatologist in 65.7% of respondents with the remainder reporting diagnosis by their general practitioner. The median duration of PMR symptoms reported was 20 months (interquartile range 12, 36). Characteristics of the respondents are presented in Table 1.

TABLE 1.

Characteristics of respondents diagnosed with PMR by a medical practitioner.

Age (years) [mean (SD)]
Female	67.1 (7.5) range 41–82
Male	66.6 (8.0) range 49–81
Marital status
Single or never married	8 (5.5%)
Married/de facto	100 (68.5%)
Separated/divorced	21 (14.4%)
Widowed	12 (8.2%)
Prefer not to say	5 (3.4%)
Highest education level
High school (Year 11 or below)	25 (17.4%)
High school (Year 12)	16 (11.1%)
Trade/vocational/technical	41 (28.5%)
Bachelor degree	37 (26.7%)
Postgraduate degree	25 (17.4%)
Work status
Full‐time employment	20 (13.7%)
Part‐time employment	21 (14.4%)
Unemployed	8 (5.5%)
Self‐employed	11 (7.5%)
Home maker	1 (0.7%)
Retired	85 (58.2%)

Respondents were requested to recall whether they had been given advice by their doctor regarding various aspects of their management and potential coping strategies. Responses to this question are presented in Figure 1.

FIGURE 1.

Responses in the affirmative to the question “Have you been given advice by your doctor regarding the following”.

Respondents were asked separately about their experience of receiving information regarding steroid medication use. 77.2% reported that they had received information regarding potential side effects of steroid medication. Only 40% of respondents reported that they received guidance with regard to exercise as a mitigating component of prolonged steroid use.

Eighty‐two people provided free comments in response to the question “What information would you like to know from your treating practitioner regarding physical activity when thinking about your condition?”. These comments were consolidated into 8 distinct themes. The most frequent response (24 respondents) was the desire for more guidance in relation to balancing the amount of activity undertaken whilst being treated for PMR. Sixteen respondents desired information regarding activities that may be appropriate to undertake and how to commence physical activity. A further seven respondents sought more information with regard to when activity may be causing tissue damage and four respondents desired information regarding managing their bone health. The remaining themes reported included maintenance and safe progression of physical activity, using medication when active and understanding the importance of physical activity.

In response to the question “What would you like to know from your treating practitioner regarding your ability to perform or improve your daily function?”, 76 free responses were received, which were consolidated into 8 distinct themes. The most common theme was requesting information regarding the side effects of prescribed medication and its impact on function (n‐ = 18). 15 responses pertained to understanding how to maintain and progress levels of physical function. Thirteen respondents desired an understanding of what other health practitioners may offer and what other sources of information existed for people with PMR. The remaining themes included management of fatigue (n = 6), establishing limits to physical activity (n = 8), improving pain management (n = 4) and understanding a timeline to recovery (n = 4).

The final open‐ended question, “What would you like to know about specific exercises to assist in the management of your condition?”, elicited 81 responses, which were consolidated into 6 themes. The most frequent response related to the wish to be provided with a specific exercise programme to assist in their management (n = 28). 25 respondents requested information on how to exercise and how to judge exercise volume given their condition. 17 respondents desired advice on balancing exercise and pain. Other topics raised were exercising for bone health, stiffness and accessing hydrotherapy.

4. Discussion

These findings provide improved insight into the information patients recall from their treating medical practitioner and their perception of areas where more information may improve their understanding and day to day management of their condition. These self‐report findings from individuals with PMR indicate that the majority of respondents are receiving information about their condition from their treating doctor. In particular, a high proportion of medical practitioners are providing information regarding pain management, the need to remain physically active, and maintaining movement of affected body parts and bone health. This contrasts with previously reported findings from the United Kingdom, which found that only 63% of patients recalled being given information about their condition by their doctor (Tshimologo et al. 2018). However, it appears that more specific information regarding fitness, muscle strength, regaining and resuming or modifying activity and managing their fatigue was less frequently provided.

Effective communication and access to accurate information are central to effective patient‐centred care, particularly for individuals with chronic or complex needs (Ernstzen et al. 2022; Lin et al. ²⁰²⁰). For people with PMR, this is recognised in clinical guidelines by the European League Against Rheumatism and the American College of Rheumatology, which state that patients should have access to information focusing on the impact of PMR and its treatment (Dejaco et al. 2015).

Education on fatigue management appears to be less frequently addressed. Fatigue has previously been highlighted as a neglected symptom for individuals with PMR with fatigue severity at the time of diagnosis appearing indicative of fatigue levels up to 5 years later (Muller et al. 2024). However, our findings suggest that information on fatigue and its management may only be recalled by around 50% of PMR patients.

Respondents were provided with an opportunity to detail additional information they would like to receive. The high number of free responses received is reflective of previous findings, which reported that nearly half of all people with PMR would like to receive more information, actively look elsewhere for information and seek self‐management strategies including those of a non‐pharmaceutical nature (Harris et al. 2023; Tshimologo et al. ²⁰¹⁸).

Despite 77% of respondents indicating that their doctor had discussion with them regarding glucocorticoid medication and its side effects, many individuals sought further information about managing the side effects of this medication including its effect on bone health. Supporting these findings, a previous survey reported that 72% of patients with PMR expressed concern about the side effects of this medication with 24% reporting that their medication negatively impacted their quality of life (Harris et al. 2023). High rates of glucocorticoid‐related comorbidities have been experienced by people with PMR including osteoporosis, diabetes, hypertension, bruising and weight gain alterations in appearance (Hoon et al. 2019; Lundberg et al. ²⁰²²). The fact that only 40% of respondents received advice on exercise in relation to glucocorticoid use may represent a missed opportunity for these patients. Exercise is recognised to reduce weight, improve glycaemic control and increase bone density and may be a useful strategy in counteracting the side effects of glucocorticoid therapy in PMR (Weddell et al. 2022).

Much of the additional information sought by respondents concerned understanding safe levels of physical and functional activity. Education on how to commence activity and balance activity levels with respect to fatigue and pain appears to be an area that might be improved, which would meet patient needs. Understanding whether pain during activity equates to actual tissue damage was also an issue for which respondents sought clarification.

In addition to general activity, specific exercise is an area of interest to our respondents. Clinical guidelines state that advice on individually tailored exercise programs should be included in a PMR management plan (Dejaco et al. 2015). Information sought by individuals in our survey included understanding specific exercises that may be appropriate, advice on exercise dosage and performing exercise in relation to pain and to the stage of their condition. Exercise for people with PMR has been suggested to maintain muscle mass and function and reduce falls risk (Weddell et al. 2022). Individualised exercise prescription and education may be used to target abnormal movement patterns and modify activity to achieve optimal function and independence (O'Brien, Liddle, et al. ²⁰¹⁹; O'Brien, Muller, et al. ²⁰¹⁹). Furthermore, PMR‐associated fatigue and malaise may result in reduced pulmonary function and deconditioning, which may be addressed by a progressive aerobic conditioning program (Iverson 2010). Whilst specific evidence for the use of exercise in PMR is lacking, similar beneficial findings in pain, stiffness and overall functioning have been demonstrated in other forms of inflammatory disease such as rheumatoid arthritis (Cooney et al. 2011).

Considering the opinions expressed by respondents and given the time pressures on primary care (Saunders et al. 2016), one suggestion is that it may be worthwhile to embrace a collaborative care model and more frequently consider the use of allied health disciplines to supplement patient care, for example consulting dieticians regarding issues around weight and diet. Given the desire expressed by respondents to understand and receive guidance regarding exercise and the frequency of musculoskeletal comorbidities in people with PMR (Partington et al. 2020), referral to physiotherapists might also be considered particularly for exercise prescription, education on energy conservation and activity modification. Utilisation of allied health resources would align with our respondents expressed interest in exploring what other health professionals have to offer for information and supplementary management of their condition.

Whilst this study provides an insight into the information received by people with PMR from their treating doctor and their preference for further information, a number of limitations should be considered. A third of people responding to the survey were diagnosed with PMR by their General Practitioner. Although PMR has been traditionally diagnosed and managed in primary care, previous investigations have shown that the diagnostic accuracy of PMR is often low and misdiagnosis in this setting may commonly occur (Manzo et al. 2018; Quick and Kirwan ²⁰¹²). Although aspects of PMR presentation have been included, not all important domains were included. One such domain is advice on the effect of PMR on sleep, which may be a persistent feature of this condition (Leung et al. 2025; Manzo et al. ²⁰²¹). The respondents for this questionnaire were drawn from an online patient support group. As such, they are people seeking further information and support for their condition, which may not be representative of all people with PMR. Further research is required to explore whether these findings can be replicated in other PMR patients.

Furthermore, the response rate for the questionnaire is unable to be ascertained. This Facebook group has 3000 registered users accumulated over 12 years of existence. It is unknown how many of these people are actively engaged in the support group at the time of data collection. Respondents to the questionnaire were asked to recall information provided to them by their treating doctor. Given that respondents had experienced symptoms and had been diagnosed over varying periods of time, it is likely that recall may be incomplete. This may lead to an underestimation of the information received with regard to the findings reported. However, any error created by this would be random and unlikely to systematically alter the pattern of participant response. Absence of recall cannot be taken as absence of information provided. However, it may indicate that other information strategies need to be implemented, including written advice (Toyoda et al. 2024), to improve patient awareness. Finally, responses indicated whether information on particular topics was provided. It does not consider the content or effectiveness of this communication.

5. Conclusion

Respondents recall receiving information regarding PMR as a condition and its management from their treating medical practitioner, and this information is provided to the vast majority of patients. This information is more likely to pertain to pain management and advice to remain active. However, respondents sought more specific advice on physical activity, exercise and medication management than is often provided. These findings provide an opportunity for medical practitioners to further explore, understand and inform the needs of individuals with PMR. Opportunity also exists to further access resources already available including other health professionals.

Author Contributions

Peter Osmotherly was responsible for the conceptualisation of the study, development of the questionnaire, data collection and analysis, writing and editing of the manuscript.

Funding

The authors have nothing to report.

Ethics Statement

Ethical approval for this study was granted by the University of Newcastle Human Research Ethics Committee (H‐2024‐0141).

Conflicts of Interest

The author declares no conflicts of interest.

Data Availability Statement

Data available on request from the corresponding author.