The perspectives and experiences of osteoporosis, falls and fracture prevention in patients with chronic inflammatory rheumatic disease: A qualitative study

The perspectives and experiences of osteoporosis, falls and fracture prevention in patients with chronic inflammatory rheumatic disease: A qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The perspectives and experiences of osteoporosis, falls and fracture prevention in patients with chronic inflammatory rheumatic disease: A qualitative study Catherine Cho, Bethan Richards, Elaine Ng, Catherine Sherrington, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7708865/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 11 You are reading this latest preprint version Abstract Objective To describe the perspectives of patients with chronic inflammatory rheumatic diseases (CIRD) regarding osteoporosis, falls and fractures in order to develop a theoretical framework to explain healthcare perceptions and key impacts, which may guide development of consumer-focussed interventions to improve care. Methods Patients ≥ 50 years with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis or systemic lupus erythematosus and a concurrent diagnosis of osteoporosis were purposively sampled from two rheumatology services based in metropolitan tertiary hospital to participate in a focus group or interview. Transcripts were thematically analysed. Results Six main themes were identified: Ambivalence towards diagnoses, changing identity and loss of confidence, complexities of management in rheumatic disease, embracing own health autonomy, entrusting care in healthcare providers and expectations for proactive care. Conclusion Patients living with CIRD may be ambivalent to osteoporosis, falls and fractures, but also fearful of the consequences to their identity and function. They value proactive care from their clinicians that addresses osteoporosis and falls prevention. Many feel their educational needs around these risks are unmet and look to clinicians for support that empowers them, fosters acceptance and acknowledges the potential threat these conditions post to independence and identity. Future interventions should incorporate patient-centred educational models and provide clinicians with the resources needed to offer meaningful preventive care. Qualitative osteoporosis falls rheumatic disease Figures Figure 1 Background Chronic inflammatory rheumatic diseases (CIRDs), including rheumatoid arthritis (RA), spondyloarthropathies, such as ankylosing spondylitis (AS) and systemic lupus erythematosus (SLE) are associated with a higher prevalence of osteoporosis, falls and greater fracture risk [ 1 – 5 ]. Osteoporosis is an asymptomatic disease, with fractures a consequence of disease progression. Diagnosis is often delayed until a first fracture occurs [ 6 ]. There remains conflicting evidence on the association of psoriatic arthritis (PsA) with osteoporosis, although current limited literature suggests an increased falls risk [ 7 – 9 ]. CIRDs also collectively account for a significant proportion of glucocorticoid use, a known independent risk factor for osteoporotic fractures. Despite widely available guidelines, including the 2024 Osteoporosis Australia guidelines and the 2022 American College of Rheumatology (ACR) Guidelines for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis, appropriate preventive measures and management are poorly implemented within clinical practice [ 10 , 11 ]. There is marked reported variability in bone mineral density (BMD) testing in CIRD patients on glucocorticoids, ranging from 6–67% in existing studies [ 12 , 13 ]. A smaller proportion of eligible patients, 22–63% of eligible patients with RA or other rheumatic disease on long term glucocorticoids are on appropriate pharmacotherapy [ 14 – 16 ]. The complex interplay between patient related factors including knowledge, beliefs, self-efficacy with disease and treatment factors, the broader healthcare system and socioeconomic factors are recognised domains determining adherence, as outlined by the World Health Organisation [ 17 ]. Several qualitative studies performed with the general population on osteoporosis and falls have found variable disease representations as a trivial and inconsequential consequence of ageing, to a threat on independence, marked fear and scepticism of treatment and dissatisfaction with quality of care and education provided from healthcare providers [ 18 – 20 ]. There is limited evidence on the perspectives and experiences of patients with CIRD, a high-risk demographic group, for osteoporosis, falls and fractures, with unique impacts of their chronic disease on physical function and engagement with the healthcare system. The aim of this study is to describe the perspectives and experiences of patients with CIRD of osteoporosis, falls and fractures to develop a theoretical framework to explain healthcare perceptions and key impacts, which may inform development of a multifaceted patient-centred intervention. Methods Participants Participants aged ≥ 50 years with a diagnosis of osteoporosis (based on BMD obtained from DEXA as per WHO definition or history of osteoporotic fracture) and a diagnosis of RA, AS, PsA or SLE (made by a rheumatologist) were recruited from two public rheumatology clinics in tertiary hospitals with different socio-demographic populations in New South Wales, Australia. Participants were purposively sampled for diversity in clinical characteristics (CIRD, disease severity, fracture and falls history) and demographics (age, gender). Ethics approval was obtained for all participating sites from the Sydney Local Health District Human Research Ethics Committee, with all participants providing written informed consent. Data collection The study combined focus groups and one-on-one interviews, conducted face-to-face or via Zoom. Mixed data collection was conducted to provide opportunity for patients with differing time schedules and comfort with data collection method to participate. A topic guide was developed from literature search, exploring understanding and experience of osteoporosis and falls, experiences with healthcare providers, perceived barriers to care and ideas for interventions (Appendix 1). Focus groups and interviews were conducted by CC. A small honorarium ( $ 50 AUD) was provided for participants participating face-to-face. Each interview was recorded and transcribed verbatim. Transcripts were entered into NVivo Ver 14. software. Data analysis Transcripts were coded line-by-line and inductively analysed using thematic analysis as per the grounded theory methodology. Each transcript was read line-by-line by author CC, who developed inductively derived codes, which were then grouped into preliminary themes and subthemes. Preliminary themes and subthemes were developed and refined through discussion with co-author DS and CS to ensure researcher triangulation. Conceptual links were identified to develop a thematic schema. Results Participant characteristics In total 25 patients participated, 10 in three focus groups and 15 in one-on one interviews. Participant characteristics are summarised in Table 1. An additional 5 patients who expressed interest did not participate due to time commitments or comfort in their level of English. The mean duration of focus groups was 60 minutes (range 61-83 minutes) and one-on-one interviews 29 minutes (range 14-54 minutes). Themes Six themes were identified: Ambivalence towards diagnoses, changing identity and loss of confidence, complexities of management in rheumatic disease, embracing own health autonomy, entrusting care in healthcare providers and expectations for proactive care, with illustrative quotations in Table 2. The relationship between themes was mapped in a thematic schema (Figure 1). Ambivalence towards diagnoses Confusion regarding diagnostic labels Osteoporosis and falls as diagnostic terms are unclear to many patients. There was confusion between osteoporosis and their established CIRD diagnosis, with misunderstanding surrounding symptomatology related to inflammatory arthritis with their osteoporosis. Descriptions of joint pain, related to osteoporosis, were common, as was confusion about the disease trajectory and treatment. There was also disconnect between osteoporosis as a diagnosis and with minimal trauma fractures. For some, despite sustaining a previous fracture, they were falsely reassured by osteopenic or normal range BMDs. For those who did recognise osteoporosis as a separate diagnostic entity, its asymptomatic nature was frequently misconstrued as lacking association with morbidity and mortality. Falls an avoidable misadventure There was a tendency for patients to blame falls because of poor decision making and “rushing,” (80F, RA) rather than due to underlying physiological mechanisms, including possibly their CIRD. Thus, falls were justified with non-injurious falls frequently dismissed as “not a big deal,” (76M, RA). Despite sustaining injuries, several remained dismissive of the serious nature of falls, with a sense of exasperation that concerns had been raised in their encounters with the healthcare system. Consequently, falls were not an indication to seek medical attention. A few patients did acknowledge pain or weakness related to their CIRD contributed to their fall but remained adamant that the fall itself was “(my) fault.” (84F, RA) Inconsistent and absent health messaging Most patients attributed their low understanding to inadequate education provided from their healthcare providers and absence of public health messaging. Aside from provision of a diagnostic label and pharmacotherapy; “...you have this, take this,” (60F, RA) many were unaware of their risk factors, including their underlying CIRD. Minimal discussion regarding the diagnosis and rationale for treatment was interpreted by some as reflecting low importance of osteoporosis and falls, influencing perception of disease and decisions surrounding adherence. Inevitability of diagnosis In the setting of CIRD, most patients felt increasing diagnostic labels “wasn’t surprising,” (52M PsA) reflecting resignation towards increased medicalisation of their identity. This occurred more frequently in the setting of chronic glucocorticoid use, with many perceiving additive health problems stemmed from their CIRD and/or its treatment. Few patients were “shocked,” by an osteoporosis diagnosis, more so men and those who perceived they were “active and fit” (69M, RA) In contrast to an osteoporosis diagnosis, patients described disbelief with sustaining fractures, especially those occurring in the absence of a fall, reflecting their disconnect between osteoporosis and fractures. Changing identity and loss of confidence Disappointment and shame at loss of function Despite ambivalence to osteoporosis and falls, patients were distressed by the inability to participate in hobbies, “not to be adventurous,” (73F, RA) and other meaningful activities. This occurred more frequently in those who had sustained injurious falls. Many grieved the loss of independence and have “lost (my) confidence,”(73F, RA) some even hiding that falls or fractures had occurred for fear of becoming a burden to their loved ones. Hypervigilance and anxiety surrounding potential consequences The possibility of injurious falls and sustaining fractures instilled fear and unease. Descriptions of “slow(ing) down,” (76F, RA) and “taking precautions,” (70F, SLE) were methods of coping for CIRD patients who had sustained previous falls and fractures. Some patients catastrophised their experience of a fall; “if I go head down, it would be no more, finish,” (65F, RA) and decided on complete activity avoidance and social withdrawal, whilst others sought assistance from family to provide reassurance and support. Signalling frailty and deteriorating health Osteoporosis, falls and fractures were perceived as related to ageing and frailty, resulting in pessimistic attitudes. Patients felt the diagnosis compounded their existing CIRD diagnosis, with descriptions of feeling “weak,” (74F, RA) “fragile,” (60M, RA) “disintegrating,” (77F, RA) and “decrepit.” (94F, RA) Some felt the diagnosis was a “wake up call,” (76M, RA) a stark reminder of their own mortality, with mourning of the disconnect between their perceived identity and physical health. Complexities of management in rheumatic disease Dissatisfaction with generic management strategies Patients with CIRD were frustrated with lack of individualised, “holistic,” (71F, RA) management plans which addressed concerns surrounding medication side effects, interactions and physical activity recommendations. Many reflected on the inability to participate in prescribed physical activity due to limitations related to deformities and pain from CIRD. Lack of understanding by providers on the impact of CIRD, experiences in being perceived as “(a) hypochondriac,” (71F, RA) further disincentivised participation. Exhausted by the burden of healthcare CIRD patients felt consumed by the physical, financial and mental burden of surmounting health-related commitments. Recounts of “deal(ing) with about 7 or 8 different doctors,” (76M, RA) to “the cost add(ing) up,” (76M, RA) led to a sense of losing control. Patients felt providers did not appreciate the impact of multiple appointments, investigations and treatment, contributing to non-adherence and resentment if adverse events to therapy occur. Helplessness balancing competing priorities Patients lamented the conflict between different treatment recommendations and impact on overall health. Feeling obligated to use glucocorticoids to manage symptoms including “pain and not being able to walk,” (74M, RA) related to CIRD despite understanding the impact on bone health led to guilt and remorse. Balancing calcium intake recommendations with cardiovascular risk factors and renal stones was felt to be challenging, with several describing weight gain with optimising dietary calcium intake, exacerbating pain related to rheumatic disease. Navigating challenges of adherence Adherence to physical activity recommendations was arduous to many patients. Lack of motivation, exacerbation of pain, accessibility and scepticism of benefit contributed to poor engagement. In comparison to CIRD pharmacotherapy which contributes to perceivable and measurable improvements in pain and function, osteoporosis treatment was viewed as “just another pill,” (80F, SLE) that “(won’t) do me any good.” (80F, SLE) Many patients on pharmacotherapy commented in improvements on bone mineral density on DEXA, but the minimal benefit on reduced fracture on day-to-day quality of life contributed to absence of tangibility in improvement in health. Embracing own health autonomy Acceptance and maintaining positivity Despite the challenges, many patients remain grateful about the function they have maintained, reflecting on their initial CIRD diagnosis and their initial fear of becoming debilitated or “wheelchair bound,” (75M, AS). Comparably, most were accepting of their diagnosis of osteoporosis or falls, with “nothing to be ashamed of.” (60M, RA) Patients described being “very determined,” (80F, SLE) resilient and have developed coping mechanisms to remain engaged with medical recommendations, with a positive outlook on maintaining function and independence. Empowering self through proactivity Patients with CIRD describe years of experience in navigating the healthcare system, gaining experience and becoming advocates for their own health. Many patients, following falls, were proactive in the use of mobility aids and making environmental modifications, describing with pride these “stopped me from having a few falls,” (72F, SLE). Few patients, mostly women, actively sought out opportunities including falls prevention classes. Proactive decisions, “I actually did it on my own,” (71F, RA) helped patients regain a sense of control and confidence. Information seeking to improve health literacy To strengthen their self-advocacy and coping skills, many patients seek education from various sources, ranging from the media, friends, family and healthcare professionals. The chronicity of their underlying rheumatic disease, direct impact on quality of life and anxiety related to future prognosis motivated many patients to better understand their medical conditions. Many patients also described the need to have “a degree of scepticism,” (75M, AS) with misinformation available in the community, deferring to “literature,”(52M, PsA) provided by trusted healthcare providers alongside their own sources of information to guide decision making. Seeking consolation and advice from others Healthcare decisions and perceptions were frequently influenced by the experiences had by those close to patients. Patients who participated in focus groups, shared positive experiences of building relationships with “people who understand what we’re going through,” (60F, SLE) inclusive of those with other chronic diseases impacting function. Hesitancy with treatment, including avoiding mobility aids and pharmacotherapy, were allayed through observation of and encouragement from others. Discussing mutual challenges with others suffering from CIRD helped patients feel understood and their concerns validated. Entrusting care in healthcare providers Building positive therapeutic relationships Given the chronicity of CIRD, most patients have a longitudinal therapeutic relationship with their rheumatologist and/or general practitioner (GP). Positive attributes described by patients include expertise, approachability and delivery of proactive, reliable and comprehensive care. Patients had confidence in their treating rheumatologists, who “gave me a quality of life back that I didn’t expect,” (66F, RA) with most describing relationship with a single rheumatologist lasting “years.” Positive relationships were vital in enabling patient acceptance of osteoporosis and falls diagnoses and treatment, with their longitudinal nature providing the opportunity for proactive care and increasing treatment acceptance. Preference for specialist care Many patients, given the existing therapeutic relationship with their rheumatologists, voiced a preference for osteoporosis and falls to be managed by their treating rheumatologist. This was more likely in those who had multiple specialists already involved in their care. There was a perception that specialists may have “more experience on this type of thing,” (74F, RA) particularly in those who have significant glucocorticoid use and understand the direct impact of their CIRD on increasing falls risk. Many patients thought their rheumatologists had greater access to programs for physical therapy. Regular pre-existing appointments with their rheumatologist were another rationale for preference of specialist care, whereas at times accessibility to their GP was variable. Trusting of recommendations Most patients with CIRD were trusting of recommended management plans for osteoporosis and falls, acknowledging their healthcare providers are “trained and qualified and recommends what I hope is the right advice.” (69M, RA) Previous positive experiences with treatment of CIRD increased the likelihood of accepting treatment for osteoporosis and falls from trusted providers. Generally, advice on lifestyle modification and over-the-counter supplements, was more readily received in comparison to pharmacotherapy due to greater perceived safety, however, there was recognition that pharmacotherapy was only prescribed when “you need a medication.” (72F, SLE) One patient, in contrast, developed scepticism and significant distrust following an atypical femoral fracture following prolonged bisphosphonate use, quoting she “question(s) everything now.” (80F, SLE) Expectations for proactive care Advocacy for health promotion and education Patients with CIRD expect to be informed their higher risk of osteoporosis, falls and fracture, but voice a need for increased awareness in the general community. Methods of information dissemination, including “through the media,” (59M, PsA) “at an early stage, kids, in school,” (59M, PsA) and “discussion clinics,” (66F, RA) were suggested methods through which the general population may increase health literacy surrounding bone health, promoting health-seeking behaviour. Many longed for more education from their healthcare providers “in a way the patient can understand,” (72F, SLE) and the opportunity to ask questions, to enable better understanding of the expected trajectory of disease, function and how treatment may modify the course. Assumptions on clinician responsibility There is an implicit expectation of healthcare providers to take leadership in providing preventive care, particularly with co-morbidities that are related to underlying CIRD and its treatment. Patients explained the expertise and experience of clinicians placed them in suitable position to demonstrate proactivity in “looking at the big picture.” (71F, RA) Patients described profound disappointment with the possibility that their falls and fractures may have been prevented through early intervention. Patients did not place sole responsibility on their GP or rheumatologist in initiating preventive care, “surely somebody can just take responsibility,” (69M, RA) but stated effective communication between clinicians should exist to ensure continuity of care. Frustrated with accessibility to care Poor accessibility to healthcare services was a frequent hindrance by patients with CIRD to seeking care for osteoporosis and falls. GP appointments were difficult to arrange, ultimately leading to patients seeking appointments “for the referrals,” (67F, RA) or for an acute medical problem. In the absence of significant injuries, seeking medical attention for falls was considered prohibitive. Appointments were described as “in and out you know,” (59M, PsA) time-constrained, inevitably with preventive care neglected. Accessing allied health was perceived as “impossible,” (84F, RA) with long waiting times and “very difficult,” (79F, RA) logistical challenges. Simplifying early diagnosis and management Reflecting on the barriers to prevention of falls and osteoporotic fractures, suggestions were made on the need to streamline and simplify screening to “make it easier for us.” (72F, SLE) Patients were surprised about the absence of a universal screening program for osteoporosis, quoting the breast and bowel cancer screening programs as examples of successful programs, which could be replicated into a program for osteoporosis that is “a little bit more integrated and automated.” (72F, SLE) There was confusion about the role of BMD in diagnosis and risk stratification, with patients preferring easily understood objective measures through diagnostic modalities, such as a “blood test,” (65M, RA) rather than risk assessment tools and DEXA scan. [Insert Figure 1] [Insert Table 2] Discussion Osteoporosis, falls and fractures are conceptualised by CIRD patients as ranging from an unexpected diagnosis given its perception as a disease of the ageing or negative lifestyle choices or related to inevitable consequences related to glucocorticoid use or family history. Confusion with osteoporosis and CIRD or other rheumatic conditions, particularly osteoarthritis was common. Intensified fear of falling, permanent cautiousness and social withdrawal were frequent consequences of previous fracture, despite indifference with an initial osteoporosis diagnosis. The fragmented nature of patient perspectives highlights unmet educational needs, voiced by patients as to be inadequate from their treating clinicians. The diagnosis forced patients to accept additional pharmacotherapy and navigate resource-constrained healthcare systems to access physical therapy, which often was not individualised for their limitations from CIRD. While living with chronic disease was overwhelming, with patients lamenting the excessive focus on medications and failure to adopt a holistic approach, they demonstrated resilience and perseverance through trusting therapeutic relationships and advocating for autonomy. CIRD patients voiced a need for greater knowledge, to enable prioritisation of medical conditions and self-management. They wanted education on why they developed osteoporosis, understanding of available pharmacotherapy, expected trajectory of disease and how treatment may modify this. These are in line with educational needs identified in existing studies in osteoporosis in the general population [21, 22]. They desired education from their trusted healthcare providers but frequently filled in gaps in knowledge from information from friends, family and the media, at times with misinformation. Indeed contradictory information has been recognised in qualitative studies in CIRD to contribute to concern about medication and consequently, adherence [23] CIRD patients preferred their rheumatologist as a resource for education, with this sentiment well-recognised in existing literature in osteoporosis and in CIRDs [22, 24, 25]. However, clinicians in routine clinical practice face challenges in delivering patient education, with identified barriers including organisational constraints, lack of formal training and adaptability to learning styles, pre-existing health literacy of patients, language and cultural barriers [26, 27]. The need for dedicated resources with trained clinicians is highlighted by the success of multidisciplinary models of care such as Fracture Liaison Services (FLS), which demonstrate reductions in re-fractures through increasing BMD testing, treatment initiation and adherence [28]. CIRD patients in our study suggested facilitating group discussion sessions to enable support, understanding and conviviality, which has been suggested by patients in existing qualitative studies on osteoporosis and supported in trials [29, 30]. This approach was not felt to be suitable by all patients, with some preferring direct education from their clinicians. While healthcare providers should be aware of patient characteristics and preferences to enable delivery of personalised and suitable routes of education, greater support through availability of supportive resources and training may improve patient satisfaction and acceptance of treatment The roles and responsibilities of clinicians are poorly defined regarding preventive care, with increasing expectation of rheumatologists in managing relevant co-morbidities [31, 32]. This carries implications for treating rheumatologists who provide care for patients with CIRDs. A longitudinal, trusting therapeutic relationship remains vital for patients in encouraging professional vigilance and patient acceptance of treatment. The responsibility of rheumatologists and GPs in delivering preventive care for cardiovascular disease has previously been explored in qualitative studies, with rheumatologists more likely to transfer cardiovascular risk factor management to GPs, whilst GPs report delegating osteoporosis management to rheumatologists due to perceived expertise in respective areas [33]. A qualitative systematic review found barriers including lack of confidence in managing osteoporosis in the setting of multimorbidity by GPs due to inadequate education, generic guidelines and limited clinical experience at the level of primary care[34]. Supporting this, we found patients with CIRD preferred their rheumatologists managing bone health and reducing falls risk, with specialists perceived as more interested and knowledgeable in this field in existing studies in osteoporosis [22, 35]. Proactivity and attention are required by rheumatologists in managing osteoporosis and reducing falls risk in CIRD, in line with current guidelines and expectations of patients and GPs. Suggestions were made for a universal screening program, like those available for breast and bowel cancer, given the current gap in osteoporosis and falls prevention. There remains controversy regarding optimal strategies and the cost-effectiveness of primary screening for osteoporosis [36]. In Australia, current guidelines recommend clinical risk factor assessment in post-menopausal women and men ≥50 years, followed by BMD measurement and consideration of pharmacotherapy based on fracture risk utilising the FRAX score [11]. Based on risk factor assessment, most patients with CIRD≥50 years should undertake BMD measurement through DEXA. The uptake of primary screening utilising risk factor assessment however remains poor [37]. Several barriers have been identified with this approach, with patients in a qualitative study reporting on incorrect assumptions on fracture risk based on appearance or demographics by clinicians, fractures mistaken as non-osteoporotic and contradictory information about accessibility to BMD testing [38]. Two large trials have supported primary screening through community-based questionnaires for fracture risk assessments, with findings of reduced hip fractures, however, without reduction in all osteoporosis-related fractures and unclear cost effectiveness [39, 40]. Low participation was a major limitation of the above studies, likely reflecting population awareness of osteoporosis, highlighting the need to supplement proposed screening programs with population-based interventions inclusive of education. The strengths of this study was the broad sampling across four CIRDs, inclusive of females and males. Patients were offered the option of participating in focus groups or interviews, with different modalities of data collection (face-to-face or via Zoom) enabling recruitment of participants who may have declined to participate otherwise. To our knowledge, although there are qualitative studies in patients with glucocorticoid induced osteoporosis, there are no qualitative studies on falls and fractures within the CIRD population. There are limitations of this study. All CIRD patients were English speaking, recruited from two public rheumatology clinics in tertiary referral teaching hospitals in metropolitan areas in Australia, with unclear transferability of findings to other populations. Patients who agreed to participate in the study may have greater interest and health literacy surrounding osteoporosis and falls. The importance of rheumatologists and GPs in managing osteoporosis and falls were highlighted by patients with CIRD in our study. Future qualitative studies with stakeholder clinicians may enable further development of the complex mechanisms underlying osteoporosis and falls prevention in high-risk patients with CIRD. Our study has highlighted the need for proactivity of clinicians in providing early preventive, rather than reactive osteoporosis and falls prevention in CIRD patients, in line with current guidelines and patient expectations. There are unmet educational needs for patients, with provision of reliable information necessary to close the bridge between recognition of osteoporosis and falls as a disease and the impact on function and quality of life. Accessibility to non-pharmacological physical therapy interventions with professionals trained in recognising limitations from CIRD alongside rheumatologist-led patient tailored education is required. Understanding barriers from a clinician perspective may assist alongside our findings in developing an acceptable and feasibly intervention to reduce the burden of osteoporosis and falls in high risk CIRD patients. Abbreviations ACR: American College of Rheumatology AS: Ankylosing spondylitis BMD: bone mineral density CIRD: Chronic inflammatory rheumatic disease DEXA: dual energy x-ray absorptiometry GP: General practitioners PsA: Psoriatic arthritis RA: Rheumatoid arthritis SLE: Systemic lupus erythematosus Declarations Ethics approval and consent to participate Ethics approval was obtained for all participating sites from the Sydney Local Health District Human Research Ethics Committee, with all participants providing written informed consent. Consent for publication All participants provided written informed consent. Availability of data and materials Interview and focus group transcripts are not publicly available, but may be made available based on request to the corresponding author, pending further approval from the local ethics committee. Competing interests The authors declare that they have no competing interests. Funding CC (corresponding author) was supported by a scholarship from Arthritis Australia. CS is supported by a National Health and Medical Research Council (NHMRC) Investigator Grant. Authors’ contributions All authors were involved in inception, study design and participant recruitment. CC conducted the interviews and focus groups, analysed data and was a major contributor in writing the manuscript. DS was a major contributor in data analysis and writing the manuscript. CS contributed to data analysis and writing the manuscript. EN contributed to study design and participant recruitment. BR contributed to study design and participant recruitment. All authors read and approved the final manuscript. Acknowledgements The authors would like to acknowledge the Department of Rheumatology at Concord Hospital and Liverpool Hospital for their assistance in recruitment of participants for the study. References Kim SY, Schneeweiss S, Liu J, Daniel GW, Chang CL, Garneau K, et al. 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Beauvais C, Poivret D, Lespessailles E, Thevenot C, Aubraye D, Euller Ziegler L, et al. Understanding patients’ perspectives and educational needs by type of osteoporosis in men and women and people with glucocorticosteroid-induced osteoporosis: a qualitative study to improve disease management. Calcified Tissue International. 2019;105:589-608. Nielsen D, Ryg J, Nielsen W, Knold B, Nissen N, Brixen K. Patient education in groups increases knowledge of osteoporosis and adherence to treatment: a two-year randomized controlled trial. Patient education and counseling. 2010;81(2):155-60. RACCS Working Group. Rheumatoid Arthritis Clinical Care Standard: Australian Rheumatology Association; 2024 [updated May 2024. Available from: https://rheumatology.org.au/Portals/2/Documents/Public/Professionals/Clinical%20Care%20Standards/RAQS-UPDATE-Clinicians-ACCESS-03-7May24.pdf?ver=2024-05-07-135934-023. Baillet A, Gossec L, Carmona L, Wit MD, Van Eijk-Hustings Y, Bertheussen H, et al. Points to consider for reporting, screening for and preventing selected comorbidities in chronic inflammatory rheumatic diseases in daily practice: a EULAR initiative. Annals of the Rheumatic Diseases. 2016;75(6):965-73. Bartels CM, Roberts TJ, Hansen KE, Jacobs EA, Gilmore A, Maxcy C, et al. Rheumatologist and primary care management of cardiovascular disease risk in rheumatoid arthritis: patient and provider perspectives. Arthritis care & research. 2016;68(4):415-23. Cho C, Bak G, Sumpton D, Richards B, Sherrington C. Perspectives of healthcare providers on osteoporosis, falls and fracture risk: a systematic review and thematic synthesis of qualitative studies. Archives of Osteoporosis. 2024;19(1):90. Otmar R, Reventlow SD, Nicholson GC, Kotowicz MA, Pasco JA. General medical practitioners' knowledge and beliefs about osteoporosis and its investigation and management. Archives of Osteoporosis. 2012;7(1-2):107-14. Leslie WD, Crandall CJ. Population-based osteoporosis primary prevention and screening for quality of care in osteoporosis, current osteoporosis reports. Current Osteoporosis Reports. 2019;17:483-90. Gillespie CW, Morin PE. Trends and disparities in osteoporosis screening among women in the United States, 2008-2014. The American Journal of Medicine. 2017;130(3):306-16. Sale J, Gignac M, Hawker G, Beaton D, Frankel L, Bogoch E, et al. Patients do not have a consistent understanding of high risk for future fracture: a qualitative study of patients from a post-fracture secondary prevention program. Osteoporosis International. 2016;27:65-73. Rubin KH, Rothmann MJ, Holmberg T, Høiberg M, Möller S, Barkmann R, et al. Effectiveness of a two-step population-based osteoporosis screening program using FRAX: the randomized Risk-stratified Osteoporosis Strategy Evaluation (ROSE) study. Osteoporosis International. 2018;29:567-78. Turner DA, Khioe RFS, Shepstone L, Lenaghan E, Cooper C, Gittoes N, et al. The cost‐effectiveness of screening in the community to reduce osteoporotic fractures in older women in the UK: economic evaluation of the SCOOP study. Journal of Bone and Mineral Research. 2018;33(5):845-51. Tables Table 1. Participant characteristics Characteristics n (%) CIRD Rheumatoid arthritis Systemic lupus erythematosus Psoriatic arthritis Ankylosing spondylitis 19 (76) 3 (12) 2 (8) 1 (4) Sex Female Male 17 (68) 8 (32) Age (years) 50-59 60-69 70-79 80-89 90+ 2 (8) 7 (28) 12 (48) 3 (12) 1 (4) Fracture history Yes No 17 (68) 8 (32) Fall in the previous 12 months Yes No 15 (60) 10 (40) Pharmacotherapy (excluding vitamin D, calcium) Yes No 20 (80) 5 (20) Table 2. Illustrative quotations for themes and subthemes Theme Illustrative quotations Ambivalence towards diagnoses Confusion regarding diagnostic labels “That's bone running against bone, isn't it?” (74M, RA) “It didn’t really make much difference. It was just the same. I had pain in the bones and no matter what you called it the pain was still the same.” (76M, RA) “I guess when I see a lot of my friends going for hip replacements and knee replacements as they get older, I don’t know whether that’s true osteoporosis or normal wear and tear.” (75M, AS) Falls an avoidable misadventure “It's because I tend to run. And that's, and I thought I've got to slow down. Cause I was the last one in the bus you see. So. But that was the last time I had a big accident. It was my fault.” (80F, RA) “Not just falling, there’s been a reason for it.” (72F, RA)“No it’s not an ongoing problem, it just happened once. I didn’t need any behavioural changes or move the furniture on anything. It’s not a big deal.” (76M, RA) Inconsistent and absent health messaging “They say you’ve got, or you’re forming osteoporosis but where does it come from? Is it linked to lupus or rheumatology? Arthritis?” (60F, SLE) “It’s a bit embarrassing really. They don’t tell you much. They just tell you this is the medication, take this.” (72F, RA) “Frankly when I came in earlier and I was being treated, nobody ever mentioned osteoporosis to me. At the hospital, not even once.” (75M, AS) Inevitability of diagnosis “I knew it would happen. So I went along with it because I felt okay. I’ve had worse things happen.” (80F, RA) “I just thought add it to the list. Just add it to the list you know.” (71F, RA) “Oh look, it wasn’t surprising because of the amount of steroids I had to take over the years.” (52M, PsA) Changing identity and loss of confidence Disappointment and shame at loss of function “I lost my confidence after I smashed my elbow. I lost my confidence. I have to be very honest.” (73F, RA)“It’s all those sorts of things that concern me more because I don’t like the idea of becoming incapable.” (69M, RA) “It is quite humiliating that you can’t walk normally.” (66F, RA) Hypervigilance and anxiety surrounding potential consequences “I’m really scared. I’m so stupid. I’m scared.” (73F, RA)“Yes I’m worried. Very worried. But now I can’t like, I can’t go out by myself. Must be someone with me. It’s why.. for my age, if I fall, won’t be in one piece you see. So I say, I must be very careful. Hold onto someone just in case.” (76F, RA) “I’m not brave anymore. If my head went down first it would be no more, finish. You know?” (65F, RA) Signalling frailty and deteriorating health “You are no longer strong as before. This is the new me. Appearance don’t look old, but very weak. Even my mum when she was 70 years was better than me.” (65F, RA)“I wondered why I’m so fragile.” (60M, RA)“It made me feel so old and decrepit. Then I wasn’t even as old as I am now so you know.” (94F, RA) Complexities of management in rheumatic disease Dissatisfaction with generic management strategies “All the doctors say you’ve got to exercise, it’s good for your bones, but you can’t hold anything.. I find it hard with my hands… I’m not exaggerating, but it’s frustrating.” (71F, RA) “That’s what I think with autoimmune conditions. You have to look after people holistically, you know? I always feel like it’s self driven. There’s no one looking at the big picture.” (71F, RA)“I didn’t know there were other medications, she didn’t tell me that I had a choice.” (75M, AS) Exhausted by burden of healthcare “You’re always consulting for things. When I go, it’s never for 5 minutes. No, there’s this and that, this and that, this has broken out and we don’t even know what it is.” (71F, RA) “I can’t keep up with what I’m already supposed to do.” (60F, SLE)“No, look I can’t remember. I deal with about 7 or 8 different doctors.” (76M, RA) Helplessness balancing competing priorities “I try and be um, conservative about it, but when it gets to the point, like you’re quality of life gets so bad I just have to use it.” (71F, RA) “Because I’ve been trying but I’ve been putting on weight since I’ve been trying to eat more calcium rich foods.” (60F, SLE) “I have to accept that because I knew the impact of it, but at that time, there’s not much choice. Being in pain and not being able to walk. (74M, RA) Navigating challenges of adherence “That’s why I’ve decided now that I just don’t want to have anymore. I just don’t think.. I just don’t want to do it. If I’m very honest with you it’s just another pill.” (80F, SLE) “In terms of strengthening, I got a paper. Sometimes I do that, sometimes I don’t. That’s what it is now.” (65F, RA) “I can’t walk upstairs and two, everytime I come to the hospital it costs me $60 for a taxi and I’m just not going to come two or three times a week to do a bit of exercise which is going to painful anyway.” (76M, RA) Embracing own health autonomy Acceptance and maintaining positivity “I don’t let it stop me. I don’t, I’m very determined.” (80F, SLE) “Because I don’t feel shame or something. Doesn’t matter. I’ve got this disease, I have to use something like this and I’m getting old so there’s nothing to be ashamed of.” (60M, RA) “I can shower, I can drive my car and I can do everything I want. I don’t have to stop you know?” (79F, RA) Empowering self through proactive decisions “I was quite proactive when I had my fall because.. I did mention it and gone to a physio and gotten exercises to strengthen up.” (60F, SLE) “So I’m really down to, I’ve put in grabrails in the shower, I’ve had the shower redone with anti-slip tiles and waterproofed. I’ve put out the lawn and I’ve got anti-slip pavements.” (78F, RA)“I like to use a walking stick or a frame. It makes me feel more stable.” (77F, RA) “So I’m working at the gym on balance as well. More though to get strength in my legs, lower leg work at the gym and stuff like that. Working on balance as well. Like, lunges and stuff like that.” (52M, PsA) Information seeking to improve health literacy “I’m pretty mindful of my health, always have been. Different things and read up a lot.” (71F, RA) “My older sister is a retired surgeon so I learnt a little bit from here.” (73F, RA)“…talking to different people, when I was in hospital. They were on something to do with osteoporosis. So I knew a few people that were on it..” (77F, RA) Seeking consolation and advice from others “The other thing was there was a lot of ladies there who had gotten to terms with how they were and the changes as you get older. But we seemed to all gravitate and understand because we helped each other along the way. That was pretty good.” (80F, SLE)“She goes. But she couldn't do it without a walker and she gets really good exercise and holds her up. Yeah, she's really very good and she's marvellous. She's so much better now that she's able to get good exercise.” (80F, RA) “….maybe some discussion clinics, for people to gather and chat.” (66F, RA) Entrusting care in healthcare providers Building positive therapeutic relationships “I trust my GP. I trust the medical practice you see. I absolutely trust them, like I trust Dr (name) and Dr (name). I’m so grateful to them for taking care of me, all these years.” (75M, AS) “No, I can’t complain about my rheumatologist because he checks everything. He’s been remarkable, honestly.” (77F, RA) “We’ve got to know each other know that I can ring Dr (name) anytime I want if I’m worried about something. She knows that I won’t bother her if it’s not important. So we do have a very good working relationship there.” (76M, RA) Trusting of recommendations “I go to a doctor who’s trained and qualified and recommends what I hope is the right advice.” (69M, RA) “Yeah so I just follow instructions, what to take, when to eat you know to try to stop any effects when you take medications. It’s working for the moment.” (60F, SLE) “I never miss any of those. I write everything down.” (78F, RA) Preference for specialist care “I think rheumatologist. They have more experience on this type of thing. They know more about this and that’s it.” (74F, RA) “Actually when you’re diagnosed with rheumatoid arthritis, they already see the specialist right? So I think the specialist should do it.” (60M, RA)“Well I see (name) for the rheumatoid arthritis so him I suppose. He’d know the most about the arthritis and prednisone and the effect on bone.” (69M, RA) Expectations for proactive care Advocacy for health promotion and education “If they have more information they can give it to the patient in a way the patient can understand. That would be more helpful.” (67F, RA)“Maybe pass on more information to the GPs as well. Because that’s there it starts basically. Before we come to clinics or hospitals.” (75M, AS)“But I guess just to bring awareness that there is a high risk. That you have a condition that is prone to break your bones.” (74M, RA) Assumptions on clinician responsibility “…not just waiting for a patient to come in and say they’ve come in because they’ve been told they’ve got osteoporosis. Or had a fracture.” (75M, AS)“Look well, there’s always to-ing and fro-ing with letters to each other. Surely somebody can just take responsibility and mention it to the other one, so everybody knows.” (69M, RA) “I always feel like it’s self-driven. There’s no one looking at the big picture.” (71F, RA) Frustrated with accessibility to care “But they said look, you’ll be waiting forever. The wait is too long.” (71F, RA) “But it’s just sort of like, next patient, next patient. They spend time with you when you’ve got a problem but it’s not the same as before.” (59M, PsA)“It’s a shame they don’t do at (name) because I can drive there and there’s plenty of parking. Very difficult. And to go on the bus it’s too hard. Going up and down I’m too scared I might fall.” (79F, RA) Simplifying early diagnosis and management “I really think they should make a program for it. I mean, we do the mammogram and the bowel cancer program.” (72F, SLE) “Something that's a little bit more integrated and a bit more automated.” (66F, RA)“Oh.. maybe if it could be picked up in blood tests that people do. Because I do a blood test every 3 months.” (65M, RA) Additional Declarations No competing interests reported. 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07:28:19","extension":"html","order_by":10,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":127395,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7708865/v1/af540c1fb3acde467dbaa969.html"},{"id":94638125,"identity":"2c55ecb4-2e9d-494f-8629-89f6a438f456","added_by":"auto","created_at":"2025-10-29 07:28:19","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":132751,"visible":true,"origin":"","legend":"\u003cp\u003eThematic schema, demonstrating a theoretical framework to understand the experience and perspectives of the management and prevention of osteoporosis, falls and fractures in a high-risk group of patients with CIRD\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-7708865/v1/81da840025ba9119bd31a6c2.png"},{"id":94672332,"identity":"4905d435-c693-44aa-97f6-286f2514001f","added_by":"auto","created_at":"2025-10-29 13:40:17","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":826774,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7708865/v1/f6b89767-b2e5-4514-adac-a7d6d12a0b40.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"The perspectives and experiences of osteoporosis, falls and fracture prevention in patients with chronic inflammatory rheumatic disease: A qualitative study","fulltext":[{"header":"Background","content":"\u003cp\u003eChronic inflammatory rheumatic diseases (CIRDs), including rheumatoid arthritis (RA), spondyloarthropathies, such as ankylosing spondylitis (AS) and systemic lupus erythematosus (SLE) are associated with a higher prevalence of osteoporosis, falls and greater fracture risk [\u003cspan additionalcitationids=\"CR2 CR3 CR4\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Osteoporosis is an asymptomatic disease, with fractures a consequence of disease progression. Diagnosis is often delayed until a first fracture occurs [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. There remains conflicting evidence on the association of psoriatic arthritis (PsA) with osteoporosis, although current limited literature suggests an increased falls risk [\u003cspan additionalcitationids=\"CR8\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. CIRDs also collectively account for a significant proportion of glucocorticoid use, a known independent risk factor for osteoporotic fractures.\u003c/p\u003e\u003cp\u003eDespite widely available guidelines, including the 2024 Osteoporosis Australia guidelines and the 2022 American College of Rheumatology (ACR) Guidelines for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis, appropriate preventive measures and management are poorly implemented within clinical practice [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. There is marked reported variability in bone mineral density (BMD) testing in CIRD patients on glucocorticoids, ranging from 6\u0026ndash;67% in existing studies [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. A smaller proportion of eligible patients, 22\u0026ndash;63% of eligible patients with RA or other rheumatic disease on long term glucocorticoids are on appropriate pharmacotherapy [\u003cspan additionalcitationids=\"CR15\" citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. The complex interplay between patient related factors including knowledge, beliefs, self-efficacy with disease and treatment factors, the broader healthcare system and socioeconomic factors are recognised domains determining adherence, as outlined by the World Health Organisation [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Several qualitative studies performed with the general population on osteoporosis and falls have found variable disease representations as a trivial and inconsequential consequence of ageing, to a threat on independence, marked fear and scepticism of treatment and dissatisfaction with quality of care and education provided from healthcare providers [\u003cspan additionalcitationids=\"CR19\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThere is limited evidence on the perspectives and experiences of patients with CIRD, a high-risk demographic group, for osteoporosis, falls and fractures, with unique impacts of their chronic disease on physical function and engagement with the healthcare system. The aim of this study is to describe the perspectives and experiences of patients with CIRD of osteoporosis, falls and fractures to develop a theoretical framework to explain healthcare perceptions and key impacts, which may inform development of a multifaceted patient-centred intervention.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eParticipants\u003c/h2\u003e\u003cp\u003eParticipants aged\u0026thinsp;\u0026ge;\u0026thinsp;50 years with a diagnosis of osteoporosis (based on BMD obtained from DEXA as per WHO definition or history of osteoporotic fracture) and a diagnosis of RA, AS, PsA or SLE (made by a rheumatologist) were recruited from two public rheumatology clinics in tertiary hospitals with different socio-demographic populations in New South Wales, Australia. Participants were purposively sampled for diversity in clinical characteristics (CIRD, disease severity, fracture and falls history) and demographics (age, gender). Ethics approval was obtained for all participating sites from the Sydney Local Health District Human Research Ethics Committee, with all participants providing written informed consent.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eThe study combined focus groups and one-on-one interviews, conducted face-to-face or via Zoom. Mixed data collection was conducted to provide opportunity for patients with differing time schedules and comfort with data collection method to participate. A topic guide was developed from literature search, exploring understanding and experience of osteoporosis and falls, experiences with healthcare providers, perceived barriers to care and ideas for interventions (Appendix 1). Focus groups and interviews were conducted by CC. A small honorarium (\u003cspan\u003e$\u003c/span\u003e50 AUD) was provided for participants participating face-to-face. Each interview was recorded and transcribed verbatim. Transcripts were entered into NVivo Ver 14. software.\u003c/p\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eTranscripts were coded line-by-line and inductively analysed using thematic analysis as per the grounded theory methodology. Each transcript was read line-by-line by author CC, who developed inductively derived codes, which were then grouped into preliminary themes and subthemes. Preliminary themes and subthemes were developed and refined through discussion with co-author DS and CS to ensure researcher triangulation. Conceptual links were identified to develop a thematic schema.\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eParticipant characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn total 25 patients participated, 10 in three focus groups and 15 in one-on one interviews. Participant characteristics are summarised in Table 1. An additional 5 patients who expressed interest did not participate due to time commitments or comfort in their level of English. The mean duration of focus groups was 60 minutes (range 61-83 minutes) and one-on-one interviews 29 minutes (range 14-54 minutes).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThemes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSix themes were identified: Ambivalence towards diagnoses, changing identity and loss of confidence, complexities of management in rheumatic disease, embracing own health autonomy, entrusting care in healthcare providers and expectations for proactive care, with illustrative quotations in Table 2. The relationship between themes was mapped in a thematic schema (Figure 1).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAmbivalence towards diagnoses\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConfusion regarding diagnostic labels\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOsteoporosis and falls as diagnostic terms are unclear to many patients. There was confusion between osteoporosis and their established CIRD diagnosis, with misunderstanding surrounding symptomatology related to inflammatory arthritis with their osteoporosis. Descriptions of joint pain, related to osteoporosis, were common, as was confusion about the disease trajectory and treatment. There was also disconnect between osteoporosis as a diagnosis and with minimal trauma fractures. For some, despite sustaining a previous fracture, they were falsely reassured by osteopenic or normal range BMDs. For those who did recognise osteoporosis as a separate diagnostic entity, its asymptomatic nature was frequently misconstrued as lacking association with morbidity and mortality.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFalls an avoidable misadventure\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThere was a tendency for patients to blame falls because of poor decision making and \u0026ldquo;rushing,\u0026rdquo; (80F, RA) rather than due to underlying physiological mechanisms, including possibly their CIRD. Thus, falls were justified with non-injurious falls frequently dismissed as \u0026ldquo;not a big deal,\u0026rdquo; (76M, RA). Despite sustaining injuries, several remained dismissive of the serious nature of falls, with a sense of exasperation that concerns had been raised in their encounters with the healthcare system. Consequently, falls were not an indication to seek medical attention. A few patients did acknowledge pain or weakness related to their CIRD contributed to their fall but remained adamant that the fall itself was \u0026ldquo;(my) fault.\u0026rdquo; (84F, RA)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInconsistent and absent health messaging\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMost patients attributed their low understanding to inadequate education provided from their healthcare providers and absence of public health messaging. Aside from provision of a diagnostic label and pharmacotherapy; \u0026ldquo;...you have this, take this,\u0026rdquo; (60F, RA) many were unaware of their risk factors, including their underlying CIRD. Minimal discussion regarding the diagnosis and rationale for treatment was interpreted by some as reflecting low importance of osteoporosis and falls, influencing perception of disease and decisions surrounding adherence.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInevitability of diagnosis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the setting of CIRD, most patients felt increasing diagnostic labels \u0026ldquo;wasn\u0026rsquo;t surprising,\u0026rdquo; (52M PsA) reflecting resignation towards increased medicalisation of their identity. This occurred more frequently in the setting of chronic glucocorticoid use, with many perceiving additive health problems stemmed from their CIRD and/or its treatment. Few patients were \u0026ldquo;shocked,\u0026rdquo; by an osteoporosis diagnosis, more so men and those who perceived they were \u0026ldquo;active and fit\u0026rdquo; (69M, RA) In contrast to an osteoporosis diagnosis, patients described disbelief with sustaining fractures, especially those occurring in the absence of a fall, reflecting their disconnect between osteoporosis and fractures. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eChanging identity and loss of confidence\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eDisappointment and shame at loss of function\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDespite ambivalence to osteoporosis and falls, patients were distressed by the inability to participate in hobbies, \u0026ldquo;not to be adventurous,\u0026rdquo; (73F, RA) and other meaningful activities. This occurred more frequently in those who had sustained injurious falls. Many grieved the loss of independence and have \u0026ldquo;lost (my) confidence,\u0026rdquo;(73F, RA) some even hiding that falls or fractures had occurred for fear of becoming a burden to their loved ones.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHypervigilance and anxiety surrounding potential consequences\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe possibility of injurious falls and sustaining fractures instilled fear and unease. Descriptions of \u0026ldquo;slow(ing) down,\u0026rdquo; (76F, RA) and \u0026ldquo;taking precautions,\u0026rdquo; (70F, SLE) were methods of coping for CIRD patients who had sustained previous falls and fractures. Some patients catastrophised their experience of a fall; \u0026ldquo;if I go head down, it would be no more, finish,\u0026rdquo; (65F, RA) and decided on complete activity avoidance and social withdrawal, whilst others sought assistance from family to provide reassurance and support.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSignalling frailty and deteriorating health\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOsteoporosis, falls and fractures were perceived as related to ageing and frailty, resulting in pessimistic attitudes. Patients felt the diagnosis compounded their existing CIRD diagnosis, with descriptions of feeling \u0026ldquo;weak,\u0026rdquo; (74F, RA) \u0026ldquo;fragile,\u0026rdquo; (60M, RA) \u0026ldquo;disintegrating,\u0026rdquo; (77F, RA) and \u0026ldquo;decrepit.\u0026rdquo; (94F, RA) Some felt the diagnosis was a \u0026ldquo;wake up call,\u0026rdquo; (76M, RA) a stark reminder of their own mortality, with mourning of the disconnect between their perceived identity and physical health. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eComplexities of management in rheumatic disease\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eDissatisfaction with generic management strategies\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePatients with CIRD were frustrated with lack of individualised, \u0026ldquo;holistic,\u0026rdquo; (71F, RA) management plans which addressed concerns surrounding medication side effects, interactions and physical activity recommendations. Many reflected on the inability to participate in prescribed physical activity due to limitations related to deformities and pain from CIRD. Lack of understanding by providers on the impact of CIRD, experiences in being perceived as \u0026ldquo;(a) hypochondriac,\u0026rdquo; (71F, RA) further disincentivised participation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eExhausted by the burden of healthcare\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCIRD patients felt consumed by the physical, financial and mental burden of surmounting health-related commitments. Recounts of \u0026ldquo;deal(ing) with about 7 or 8 different doctors,\u0026rdquo; (76M, RA) to \u0026ldquo;the cost add(ing) up,\u0026rdquo; (76M, RA) led to a sense of losing control. Patients felt providers did not appreciate the impact of multiple appointments, investigations and treatment, contributing to non-adherence and resentment if adverse events to therapy occur. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHelplessness balancing competing priorities\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePatients lamented the conflict between different treatment recommendations and impact on overall health. Feeling obligated to use glucocorticoids to manage symptoms including \u0026ldquo;pain and not being able to walk,\u0026rdquo; (74M, RA) related to CIRD despite understanding the impact on bone health led to guilt and remorse. Balancing calcium intake recommendations with cardiovascular risk factors and renal stones was felt to be challenging, with several describing weight gain with optimising dietary calcium intake, exacerbating pain related to rheumatic disease.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eNavigating challenges of adherence\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAdherence to physical activity recommendations was arduous to many patients. Lack of motivation, exacerbation of pain, accessibility and scepticism of benefit contributed to poor engagement. In comparison to CIRD pharmacotherapy which contributes to perceivable and measurable improvements in pain and function, osteoporosis treatment was viewed as \u0026ldquo;just another pill,\u0026rdquo; (80F, SLE) that \u0026ldquo;(won\u0026rsquo;t) do me any good.\u0026rdquo; (80F, SLE) Many patients on pharmacotherapy commented in improvements on bone mineral density on DEXA, but the minimal benefit on reduced fracture on day-to-day quality of life contributed to absence of tangibility in improvement in health.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eEmbracing own health autonomy\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcceptance and maintaining positivity\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDespite the challenges, many patients remain grateful about the function they have maintained, reflecting on their initial CIRD diagnosis and their initial fear of becoming debilitated or \u0026ldquo;wheelchair bound,\u0026rdquo; (75M, AS). Comparably, most were accepting of their diagnosis of osteoporosis or falls, with \u0026ldquo;nothing to be ashamed of.\u0026rdquo; (60M, RA) Patients described being \u0026ldquo;very determined,\u0026rdquo; (80F, SLE) resilient and have developed coping mechanisms to remain engaged with medical recommendations, with a positive outlook on maintaining function and independence.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEmpowering self through proactivity\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePatients with CIRD describe years of experience in navigating the healthcare system, gaining experience and becoming advocates for their own health. Many patients, following falls, were proactive in the use of mobility aids and making environmental modifications, describing with pride these \u0026ldquo;stopped me from having a few falls,\u0026rdquo; (72F, SLE). Few patients, mostly women, actively sought out opportunities including falls prevention classes. Proactive decisions, \u0026ldquo;I actually did it on my own,\u0026rdquo; (71F, RA) helped patients regain a sense of control and confidence.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInformation seeking to improve health literacy\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTo strengthen their self-advocacy and coping skills, many patients seek education from various sources, ranging from the media, friends, family and healthcare professionals. The chronicity of their underlying rheumatic disease, direct impact on quality of life and anxiety related to future prognosis motivated many patients to better understand their medical conditions. Many patients also described the need to have \u0026ldquo;a degree of scepticism,\u0026rdquo; (75M, AS) with misinformation available in the community, deferring to \u0026ldquo;literature,\u0026rdquo;(52M, PsA) provided by trusted healthcare providers alongside their own sources of information to guide decision making.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSeeking consolation and advice from others\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare decisions and perceptions were frequently influenced by the experiences had by those close to patients. Patients who participated in focus groups, shared positive experiences of building relationships with \u0026ldquo;people who understand what we\u0026rsquo;re going through,\u0026rdquo; (60F, SLE) inclusive of those with other chronic diseases impacting function. Hesitancy with treatment, including avoiding mobility aids and pharmacotherapy, were allayed through observation of and encouragement from others. Discussing mutual challenges with others suffering from CIRD helped patients feel understood and their concerns validated. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eEntrusting care in healthcare providers\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eBuilding positive therapeutic relationships\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eGiven the chronicity of CIRD, most patients have a longitudinal therapeutic relationship with their rheumatologist and/or general practitioner (GP). Positive attributes described by patients include expertise, approachability and delivery of proactive, reliable and comprehensive care. Patients had confidence in their treating rheumatologists, who \u0026ldquo;gave me a quality of life back that I didn\u0026rsquo;t expect,\u0026rdquo; (66F, RA) with most describing relationship with a single rheumatologist lasting \u0026ldquo;years.\u0026rdquo; Positive relationships were vital in enabling patient acceptance of osteoporosis and falls diagnoses and treatment, with their longitudinal nature providing the opportunity for proactive care and increasing treatment acceptance. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePreference for specialist care\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany patients, given the existing therapeutic relationship with their rheumatologists, voiced a preference for osteoporosis and falls to be managed by their treating rheumatologist. This was more likely in those who had multiple specialists already involved in their care. There was a perception that specialists may have \u0026ldquo;more experience on this type of thing,\u0026rdquo; (74F, RA) particularly in those who have significant glucocorticoid use and understand the direct impact of their CIRD on increasing falls risk. Many patients thought their rheumatologists had greater access to programs for physical therapy. Regular pre-existing appointments with their rheumatologist were another rationale for preference of specialist care, whereas at times accessibility to their GP was variable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTrusting of recommendations\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMost patients with CIRD were trusting of recommended management plans for osteoporosis and falls, acknowledging their healthcare providers are \u0026ldquo;trained and qualified and recommends what I hope is the right advice.\u0026rdquo; (69M, RA) Previous positive experiences with treatment of CIRD increased the likelihood of accepting treatment for osteoporosis and falls from trusted providers. Generally, advice on lifestyle modification and over-the-counter supplements, was more readily received in comparison to pharmacotherapy due to greater perceived safety, however, there was recognition that pharmacotherapy was only prescribed when \u0026ldquo;you need a medication.\u0026rdquo; (72F, SLE) One patient, in contrast, developed scepticism and significant distrust following an atypical femoral fracture following prolonged bisphosphonate use, quoting she \u0026ldquo;question(s) everything now.\u0026rdquo; (80F, SLE)\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eExpectations for proactive care\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAdvocacy for health promotion and education\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePatients with CIRD expect to be informed their higher risk of osteoporosis, falls and fracture, but voice a need for increased awareness in the general community. Methods of information dissemination, including \u0026ldquo;through the media,\u0026rdquo; (59M, PsA) \u0026ldquo;at an early stage, kids, in school,\u0026rdquo; (59M, PsA) and \u0026ldquo;discussion clinics,\u0026rdquo; (66F, RA) were suggested methods through which the general population may increase health literacy surrounding bone health, promoting health-seeking behaviour. Many longed for more education from their healthcare providers \u0026ldquo;in a way the patient can understand,\u0026rdquo; (72F, SLE) and the opportunity to ask questions, to enable better understanding of the expected trajectory of disease, function and how treatment may modify the course. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAssumptions on clinician responsibility\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThere is an implicit expectation of healthcare providers to take leadership in providing preventive care, particularly with co-morbidities that are related to underlying CIRD and its treatment. Patients explained the expertise and experience of clinicians placed them in suitable position to demonstrate proactivity in \u0026ldquo;looking at the big picture.\u0026rdquo; (71F, RA) Patients described profound disappointment with the possibility that their falls and fractures may have been prevented through early intervention. Patients did not place sole responsibility on their GP or rheumatologist in initiating preventive care, \u0026ldquo;surely somebody can just take responsibility,\u0026rdquo; (69M, RA) but stated effective communication between clinicians should exist to ensure continuity of care. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFrustrated with accessibility to care\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePoor accessibility to healthcare services was a frequent hindrance by patients with CIRD to seeking care for osteoporosis and falls. GP appointments were difficult to arrange, ultimately leading to patients seeking appointments \u0026ldquo;for the referrals,\u0026rdquo; (67F, RA) or for an acute medical problem. In the absence of significant injuries, seeking medical attention for falls was considered prohibitive. Appointments were described as \u0026ldquo;in and out you know,\u0026rdquo; (59M, PsA) time-constrained, inevitably with preventive care neglected. Accessing allied health was perceived as \u0026ldquo;impossible,\u0026rdquo; (84F, RA) with long waiting times and \u0026ldquo;very difficult,\u0026rdquo; (79F, RA) logistical challenges.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSimplifying early diagnosis and management\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eReflecting on the barriers to prevention of falls and osteoporotic fractures, suggestions were made on the need to streamline and simplify screening to \u0026ldquo;make it easier for us.\u0026rdquo; (72F, SLE) Patients were surprised about the absence of a universal screening program for osteoporosis, quoting the breast and bowel cancer screening programs as examples of successful programs, which could be replicated into a program for osteoporosis that is \u0026ldquo;a little bit more integrated and automated.\u0026rdquo; (72F, SLE) There was confusion about the role of BMD in diagnosis and risk stratification, with patients preferring easily understood objective measures through diagnostic modalities, such as a \u0026ldquo;blood test,\u0026rdquo; (65M, RA) rather than risk assessment tools and DEXA scan. \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e[Insert Figure 1]\u003c/p\u003e\n\u003cp\u003e[Insert Table 2]\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eOsteoporosis, falls and fractures are conceptualised by CIRD patients as ranging from an unexpected diagnosis given its perception as a disease of the ageing or negative lifestyle choices or related to inevitable consequences related to glucocorticoid use or family history. Confusion with osteoporosis and CIRD or other rheumatic conditions, particularly osteoarthritis was common. Intensified fear of falling, permanent cautiousness and social withdrawal were frequent consequences of previous fracture, despite indifference with an initial osteoporosis diagnosis. The fragmented nature of patient perspectives highlights unmet educational needs, voiced by patients as to be inadequate from their treating clinicians. The diagnosis forced patients to accept additional pharmacotherapy and navigate resource-constrained healthcare systems to access physical therapy, which often was not individualised for their limitations from CIRD. While living with chronic disease was overwhelming, with patients lamenting the excessive focus on medications and failure to adopt a holistic approach, they demonstrated resilience and perseverance through trusting therapeutic relationships and advocating for autonomy.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCIRD patients voiced a need for greater knowledge, to enable prioritisation of medical conditions and self-management. They wanted education on why they developed osteoporosis, understanding of available pharmacotherapy, expected trajectory of disease and how treatment may modify this. These are in line with educational needs identified in existing studies in osteoporosis in the general population [21, 22]. They desired education from their trusted healthcare providers but frequently filled in gaps in knowledge from information from friends, family and the media, at times with misinformation. Indeed contradictory information has been recognised in qualitative studies in CIRD to contribute to concern about medication and consequently, adherence [23] CIRD patients preferred their rheumatologist as a resource for education, with this sentiment well-recognised in existing literature in osteoporosis and in CIRDs [22, 24, 25]. However, clinicians in routine clinical practice face challenges in delivering patient education, with identified barriers including organisational constraints, lack of formal training and adaptability to learning styles, pre-existing health literacy of patients, language and cultural barriers [26, 27]. The need for dedicated resources with trained clinicians is highlighted by the success of multidisciplinary models of care such as Fracture Liaison Services (FLS), which demonstrate reductions in re-fractures through increasing BMD testing, treatment initiation and adherence [28]. CIRD patients in our study suggested facilitating group discussion sessions to enable support, understanding and conviviality, which has been suggested by patients in existing qualitative studies on osteoporosis and supported in trials [29, 30]. This approach was not felt to be suitable by all patients, with some preferring direct education from their clinicians. While healthcare providers should be aware of patient characteristics and preferences to enable delivery of personalised and suitable routes of education, greater support through availability of supportive resources and training may improve patient satisfaction and acceptance of treatment\u003c/p\u003e\n\u003cp\u003eThe roles and responsibilities of clinicians are poorly defined regarding preventive care, with increasing expectation of rheumatologists in managing relevant co-morbidities [31, 32]. This carries implications for treating rheumatologists who provide care for patients with CIRDs. A longitudinal, trusting therapeutic relationship remains vital for patients in encouraging professional vigilance and patient acceptance of treatment. The responsibility of rheumatologists and GPs in delivering preventive care for cardiovascular disease has previously been explored in qualitative studies, with rheumatologists more likely to transfer cardiovascular risk factor management to GPs, whilst GPs report delegating osteoporosis management to rheumatologists due to perceived expertise in respective areas [33]. A qualitative systematic review found barriers including lack of confidence in managing osteoporosis in the setting of multimorbidity by GPs due to inadequate education, generic guidelines and limited clinical experience at the level of primary care[34]. Supporting this, we found patients with CIRD preferred their rheumatologists managing bone health and reducing falls risk, with specialists perceived as more interested and knowledgeable in this field in existing studies in osteoporosis [22, 35]. Proactivity and attention are required by rheumatologists in managing osteoporosis and reducing falls risk in CIRD, in line with current guidelines and expectations of patients and GPs.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSuggestions were made for a universal screening program, like those available for breast and bowel cancer, given the current gap in osteoporosis and falls prevention. There remains controversy regarding optimal strategies and the cost-effectiveness of primary screening for osteoporosis [36]. In Australia, current guidelines recommend clinical risk factor assessment in post-menopausal women and men\u0026nbsp;≥50 years, followed by BMD measurement and consideration of pharmacotherapy based on fracture risk utilising the FRAX score\u0026nbsp;[11]. Based on risk factor assessment, most patients with CIRD≥50 years should undertake BMD measurement through DEXA. The uptake of primary screening utilising risk factor assessment however remains poor\u0026nbsp;[37]. Several barriers have been identified with this approach, with patients in a qualitative study reporting on incorrect assumptions on fracture risk based on appearance or demographics by clinicians, fractures mistaken as non-osteoporotic and contradictory information about accessibility to BMD testing\u0026nbsp;[38]. Two large trials have supported primary screening through community-based questionnaires for fracture risk assessments, with findings of reduced hip fractures, however, without reduction in all osteoporosis-related fractures and unclear cost effectiveness\u0026nbsp;[39, 40]. \u0026nbsp;Low participation was a major limitation of the above studies, likely reflecting population awareness of osteoporosis, highlighting the need to supplement proposed screening programs with population-based interventions inclusive of education.\u003c/p\u003e\n\u003cp\u003eThe strengths of this study was the broad sampling across four CIRDs, inclusive of females and males. Patients were offered the option of participating in focus groups or interviews, with different modalities of data collection (face-to-face or via Zoom) enabling recruitment of participants who may have declined to participate otherwise. To our knowledge, although there are qualitative studies in patients with glucocorticoid induced osteoporosis, there are no qualitative studies on falls and fractures within the CIRD population. There are limitations of this study. All CIRD patients were English speaking, recruited from two public rheumatology clinics in tertiary referral teaching hospitals in metropolitan areas in Australia, with unclear transferability of findings to other populations. Patients who agreed to participate in the study may have greater interest and health literacy surrounding osteoporosis and falls. The importance of rheumatologists and GPs in managing osteoporosis and falls were highlighted by patients with CIRD in our study. Future qualitative studies with stakeholder clinicians may enable further development of the complex mechanisms underlying osteoporosis and falls prevention in high-risk patients with CIRD.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur study has highlighted the need for proactivity of clinicians in providing early preventive, rather than reactive osteoporosis and falls prevention in CIRD patients, in line with current guidelines and patient expectations. There are unmet educational needs for patients, with provision of reliable information necessary to close the bridge between recognition of osteoporosis and falls as a disease and the impact on function and quality of life. Accessibility to non-pharmacological physical therapy interventions with professionals trained in recognising limitations from CIRD alongside rheumatologist-led patient tailored education is required. Understanding barriers from a clinician perspective may assist alongside our findings in developing an acceptable and feasibly intervention to reduce the burden of osteoporosis and falls in high risk CIRD patients.\u0026nbsp;\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eACR: American College of Rheumatology\u003c/p\u003e\n\u003cp\u003eAS: Ankylosing spondylitis\u003c/p\u003e\n\u003cp\u003eBMD: bone mineral density\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCIRD: Chronic inflammatory rheumatic disease\u003c/p\u003e\n\u003cp\u003eDEXA: dual energy x-ray absorptiometry\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eGP: General practitioners\u003c/p\u003e\n\u003cp\u003ePsA: Psoriatic arthritis\u003c/p\u003e\n\u003cp\u003eRA: Rheumatoid arthritis\u003c/p\u003e\n\u003cp\u003eSLE: Systemic lupus erythematosus\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003e\u003cstrong\u003eEthics approval and consent to participate \u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eEthics approval was obtained for all participating sites from the Sydney Local Health District Human Research Ethics Committee, with all participants providing written informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eConsent for publication \u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll participants provided written informed consent.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eInterview and focus group transcripts are not publicly available, but may be made available based on request to the corresponding author, pending further approval from the local ethics committee.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eFunding \u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCC (corresponding author) was supported by a scholarship from Arthritis Australia. CS is supported by a National Health and Medical Research Council (NHMRC) Investigator Grant.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll authors were involved in inception, study design and participant recruitment. CC conducted the interviews and focus groups, analysed data and was a major contributor in writing the manuscript. DS was a major contributor in data analysis and writing the manuscript. CS contributed to data analysis and writing the manuscript. EN contributed to \u0026nbsp;study design and participant recruitment. BR contributed to study design and participant recruitment. All authors read and approved the final manuscript. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eAcknowledgements \u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to acknowledge the Department of Rheumatology at Concord Hospital and Liverpool Hospital for their assistance in recruitment of participants for the study.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eKim SY, Schneeweiss S, Liu J, Daniel GW, Chang CL, Garneau K, et al. Risk of osteoporotic fracture in a large population-based cohort of patients with rheumatoid arthritis. Arthritis research \u0026amp; therapy. 2010;12(4):R154.\u003c/li\u003e\n\u003cli\u003ePrieto-Alhambra D, Munoz-Ortego J, De Vries F, Vosse D, Arden NK, Bowness P, et al. Ankylosing spondylitis confers substantially increased risk of clinical spine fractures: a nationwide case-control study. Osteoporosis International. 2015;26(1):85-91.\u003c/li\u003e\n\u003cli\u003ePray C, Feroz NI, Nigil Haroon N. Bone Mineral Density and Fracture Risk in Ankylosing Spondylitis: A Meta-Analysis. Calcif Tissue Int. 2017;101(2):182-92.\u003c/li\u003e\n\u003cli\u003eGu C, Zhao R, Zhang X, Gu Z, Zhou W, Wang Y, et al. A meta-analysis of secondary osteoporosis in systemic lupus erythematosus: prevalence and risk factors. Archives of Osteoporosis. 2020;15(1).\u003c/li\u003e\n\u003cli\u003eBrenton-Rule A, Dalbeth N, Bassett S, Menz HB, Rome K, editors. The incidence and risk factors for falls in adults with rheumatoid arthritis: a systematic review. Seminars in arthritis and rheumatism; 2015: Elsevier.\u003c/li\u003e\n\u003cli\u003eMauck KF, Clarke BL, editors. Diagnosis, screening, prevention, and treatment of osteoporosis. Mayo Clin Proc; 2006: Elsevier.\u003c/li\u003e\n\u003cli\u003ePedreira PG, Pinheiro MM, Szejnfeld VL. Bone mineral density and body composition in postmenopausal women with psoriasis and psoriatic arthritis. Arthritis research \u0026amp; therapy. 2011;13(1):R16.\u003c/li\u003e\n\u003cli\u003eOgdie A, Harter L, Shin D, Baker J, Takeshita J, Choi HK, et al. The risk of fracture among patients with psoriatic arthritis and psoriasis: a population-based study. Ann Rheum Dis. 2017;76(5):882-5.\u003c/li\u003e\n\u003cli\u003eGulati AM, Michelsen B, A DI, Grandaunet B, Salvesen O, Kavanaugh A, et al. Osteoporosis in psoriatic arthritis: A cross-sectional study of an outpatient clinic population. RMD Open. 2018;4(1):2299.\u003c/li\u003e\n\u003cli\u003eHumphrey MB, Russell L, Danila MI, Fink HA, Guyatt G, Cannon M, et al. 2022 American College of rheumatology guideline for the prevention and treatment of glucocorticoid‐induced osteoporosis. Arthritis \u0026amp; Rheumatology. 2023;75(12):2088-102.\u003c/li\u003e\n\u003cli\u003eWong P, Chen W, Ewald D, Girgis C, Rawlin M, Tsingos J, et al. 2024 Royal Australian College of General Practitioners and Healthy Bones Australia guideline for osteoporosis management and fracture prevention in postmenopausal women and men over 50 years of age. Medical Journal of Australia. 2025.\u003c/li\u003e\n\u003cli\u003eTrijau S, de Lamotte G, Pradel V, Natali F, Allaria-Lapierre V, Coudert H, et al. Osteoporosis prevention among chronic glucocorticoid users: results from a public health insurance database. RMD open. 2016;2(2):e000249.\u003c/li\u003e\n\u003cli\u003eLedwich LJ, Clarke K. Screening and treatment of glucocorticoid-induced osteoporosis in rheumatoid arthritis patients in an urban multispecialty practice. Journal of clinical rheumatology : practical reports on rheumatic \u0026amp; musculoskeletal diseases. 2009;15(2):61-4.\u003c/li\u003e\n\u003cli\u003eKoller G, Katz S, Charrois TL, Ye C. Glucocorticoid-induced osteoporosis preventive care in rheumatology patients. Archives of Osteoporosis. 2019;14(1).\u003c/li\u003e\n\u003cli\u003eOzen G, Kamen DL, Mikuls TR, England BR, Wolfe F, Michaud K. Trends and Determinants of Osteoporosis Treatment and Screening in Patients With Rheumatoid Arthritis Compared to Osteoarthritis. Arthritis Care and Research. 2018;70(5):713-23.\u003c/li\u003e\n\u003cli\u003eFuruya T, Hosoi T, Saito S, Inoue E, Taniguchi A, Momohara S, et al. Fracture risk assessment and osteoporosis treatment disparities in 3,970 Japanese patients with rheumatoid arthritis. Clinical Rheumatology. 2011;30(8):1105-11.\u003c/li\u003e\n\u003cli\u003eSabat\u0026eacute; E. Adherence to long-term therapies: evidence for action: World Health Organization; 2003.\u003c/li\u003e\n\u003cli\u003eJavier R, Debiais F, Alliot-Launois F, Poivret D, Bosgiraud P, Barbe F, et al. Patient perceptions of osteoporosis management: a qualitative pilot study by a patient advisory group. Archives of Osteoporosis. 2025;20(1):9.\u003c/li\u003e\n\u003cli\u003eIversen MD, Vora RR, Servi A, Solomon DH. Factors affecting adherence to osteoporosis medications: a focus group approach examining viewpoints of patients and providers. J Geriatr Phys Ther. 2011;34(2):72-81.\u003c/li\u003e\n\u003cli\u003eBarker KL, Toye F, Lowe CJ. A qualitative systematic review of patients\u0026apos; experience of osteoporosis using meta-ethnography. Archives of Osteoporosis. 2016;11(1):33.\u003c/li\u003e\n\u003cli\u003eRaybould G, Babatunde O, Evans AL, Jordan JL, Paskins Z. Expressed information needs of patients with osteoporosis and/or fragility fractures: a systematic review. Archives of osteoporosis. 2018;13:1-16.\u003c/li\u003e\n\u003cli\u003eChou L, Shamdasani P, Briggs AM, Cicuttini FM, Sullivan K, Seneviwickrama K, et al. Systematic scoping review of patients\u0026rsquo; perceived needs of health services for osteoporosis. Osteoporosis International. 2017;28:3077-98.\u003c/li\u003e\n\u003cli\u003eKelly A, Tymms K, Tunnicliffe DJ, Sumpton D, Perera C, Fallon K, et al. Patients\u0026rsquo; attitudes and experiences of disease‐modifying antirheumatic drugs in rheumatoid arthritis and spondyloarthritis: a qualitative synthesis. Arthritis care \u0026amp; research. 2018;70(4):525-32.\u003c/li\u003e\n\u003cli\u003eBuckley LM, Vacek P, Cooper SM. Educational and psychosocial needs of patients with chronic disease: a survey of preferences of patients with rheumatoid arthritis. Arthritis \u0026amp; Rheumatism: Official Journal of the American College of Rheumatology. 1990;3(1):5-10.\u003c/li\u003e\n\u003cli\u003eSumpton D, Oliffe M, Kane B, Hassett G, Craig JC, Kelly A, et al. Patients\u0026apos; Perspectives on Shared Decision‐Making About Medications in Psoriatic Arthritis: An Interview Study. Arthritis care \u0026amp; research. 2022;74(12):2066-75.\u003c/li\u003e\n\u003cli\u003eLelorain S, Bachelet A, Bertin N, Bourgoin M. French healthcare professionals\u0026apos; perceived barriers to and motivation for therapeutic patient education: A qualitative study. Nursing \u0026amp; Health Sciences. 2017;19(3):331-9.\u003c/li\u003e\n\u003cli\u003eBeagley L. Educating patients: understanding barriers, learning styles, and teaching techniques. Journal of PeriAnesthesia Nursing. 2011;26(5):331-7.\u003c/li\u003e\n\u003cli\u003eWu C-H, Tu S-T, Chang Y-F, Chan D-C, Chien J-T, Lin C-H, et al. Fracture liaison services improve outcomes of patients with osteoporosis-related fractures: a systematic literature review and meta-analysis. Bone. 2018;111:92-100.\u003c/li\u003e\n\u003cli\u003eBeauvais C, Poivret D, Lespessailles E, Thevenot C, Aubraye D, Euller Ziegler L, et al. Understanding patients\u0026rsquo; perspectives and educational needs by type of osteoporosis in men and women and people with glucocorticosteroid-induced osteoporosis: a qualitative study to improve disease management. Calcified Tissue International. 2019;105:589-608.\u003c/li\u003e\n\u003cli\u003eNielsen D, Ryg J, Nielsen W, Knold B, Nissen N, Brixen K. Patient education in groups increases knowledge of osteoporosis and adherence to treatment: a two-year randomized controlled trial. Patient education and counseling. 2010;81(2):155-60.\u003c/li\u003e\n\u003cli\u003eRACCS Working Group. Rheumatoid Arthritis Clinical Care Standard: Australian Rheumatology Association; 2024 [updated May 2024. Available from: https://rheumatology.org.au/Portals/2/Documents/Public/Professionals/Clinical%20Care%20Standards/RAQS-UPDATE-Clinicians-ACCESS-03-7May24.pdf?ver=2024-05-07-135934-023.\u003c/li\u003e\n\u003cli\u003eBaillet A, Gossec L, Carmona L, Wit MD, Van Eijk-Hustings Y, Bertheussen H, et al. Points to consider for reporting, screening for and preventing selected comorbidities in chronic inflammatory rheumatic diseases in daily practice: a EULAR initiative. Annals of the Rheumatic Diseases. 2016;75(6):965-73.\u003c/li\u003e\n\u003cli\u003eBartels CM, Roberts TJ, Hansen KE, Jacobs EA, Gilmore A, Maxcy C, et al. Rheumatologist and primary care management of cardiovascular disease risk in rheumatoid arthritis: patient and provider perspectives. Arthritis care \u0026amp; research. 2016;68(4):415-23.\u003c/li\u003e\n\u003cli\u003eCho C, Bak G, Sumpton D, Richards B, Sherrington C. Perspectives of healthcare providers on osteoporosis, falls and fracture risk: a systematic review and thematic synthesis of qualitative studies. Archives of Osteoporosis. 2024;19(1):90.\u003c/li\u003e\n\u003cli\u003eOtmar R, Reventlow SD, Nicholson GC, Kotowicz MA, Pasco JA. General medical practitioners\u0026apos; knowledge and beliefs about osteoporosis and its investigation and management. Archives of Osteoporosis. 2012;7(1-2):107-14.\u003c/li\u003e\n\u003cli\u003eLeslie WD, Crandall CJ. Population-based osteoporosis primary prevention and screening for quality of care in osteoporosis, current osteoporosis reports. Current Osteoporosis Reports. 2019;17:483-90.\u003c/li\u003e\n\u003cli\u003eGillespie CW, Morin PE. Trends and disparities in osteoporosis screening among women in the United States, 2008-2014. The American Journal of Medicine. 2017;130(3):306-16.\u003c/li\u003e\n\u003cli\u003eSale J, Gignac M, Hawker G, Beaton D, Frankel L, Bogoch E, et al. Patients do not have a consistent understanding of high risk for future fracture: a qualitative study of patients from a post-fracture secondary prevention program. Osteoporosis International. 2016;27:65-73.\u003c/li\u003e\n\u003cli\u003eRubin KH, Rothmann MJ, Holmberg T, H\u0026oslash;iberg M, M\u0026ouml;ller S, Barkmann R, et al. Effectiveness of a two-step population-based osteoporosis screening program using FRAX: the randomized Risk-stratified Osteoporosis Strategy Evaluation (ROSE) study. Osteoporosis International. 2018;29:567-78.\u003c/li\u003e\n\u003cli\u003eTurner DA, Khioe RFS, Shepstone L, Lenaghan E, Cooper C, Gittoes N, et al. The cost‐effectiveness of screening in the community to reduce osteoporotic fractures in older women in the UK: economic evaluation of the SCOOP study. Journal of Bone and Mineral Research. 2018;33(5):845-51.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eTable 1. Participant characteristics\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eCharacteristics\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003en (%)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003eCIRD\u003c/p\u003e\n \u003cp\u003eRheumatoid arthritis\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSystemic lupus erythematosus\u0026nbsp;\u003c/p\u003e\n \u003cp\u003ePsoriatic arthritis\u003c/p\u003e\n \u003cp\u003eAnkylosing spondylitis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e19 (76)\u003c/p\u003e\n \u003cp\u003e3 (12)\u003c/p\u003e\n \u003cp\u003e2 (8)\u003c/p\u003e\n \u003cp\u003e1 (4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003eSex\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e17 (68)\u003c/p\u003e\n \u003cp\u003e8 (32)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003eAge (years)\u003c/p\u003e\n \u003cp\u003e50-59\u003c/p\u003e\n \u003cp\u003e60-69\u003c/p\u003e\n \u003cp\u003e70-79\u003c/p\u003e\n \u003cp\u003e80-89\u003c/p\u003e\n \u003cp\u003e90+\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2 (8)\u003c/p\u003e\n \u003cp\u003e7 (28)\u003c/p\u003e\n \u003cp\u003e12 (48)\u003c/p\u003e\n \u003cp\u003e3 (12)\u003c/p\u003e\n \u003cp\u003e1 (4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003eFracture history\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e17 (68)\u003c/p\u003e\n \u003cp\u003e8 (32)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003eFall in the previous 12 months\u003c/p\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e15 (60)\u003c/p\u003e\n \u003cp\u003e10 (40)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 312px;\"\u003e\n \u003cp\u003ePharmacotherapy (excluding vitamin D, calcium)\u003c/p\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 94px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e20 (80)\u003c/p\u003e\n \u003cp\u003e5 (20)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 2. Illustrative quotations for themes and subthemes\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\" class=\"fr-table-selection-hover\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTheme\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIllustrative quotations\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAmbivalence towards diagnoses\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eConfusion regarding diagnostic labels\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;That\u0026apos;s bone running against bone, isn\u0026apos;t it?\u0026rdquo; (74M, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;It didn\u0026rsquo;t really make much difference. It was just the same. I had pain in the bones and no matter what you called it the pain was still the same.\u0026rdquo; (76M, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I guess when I see a lot of my friends going for hip replacements and knee replacements as they get older, I don\u0026rsquo;t know whether that\u0026rsquo;s true osteoporosis or normal wear and tear.\u0026rdquo; (75M, AS)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eFalls an avoidable misadventure\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;It\u0026apos;s because I tend to run. And that\u0026apos;s, and I thought I\u0026apos;ve got to slow down. Cause I was the last one in the bus you see. So. But that was the last time I had a big accident. It was my fault.\u0026rdquo; (80F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Not just falling, there\u0026rsquo;s been a reason for it.\u0026rdquo; (72F, RA)\u0026ldquo;No it\u0026rsquo;s not an ongoing problem, it just happened once. I didn\u0026rsquo;t need any behavioural changes or move the furniture on anything. It\u0026rsquo;s not a big deal.\u0026rdquo; (76M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eInconsistent and absent health messaging\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;They say you\u0026rsquo;ve got, or you\u0026rsquo;re forming osteoporosis but where does it come from? Is it linked to lupus or rheumatology? Arthritis?\u0026rdquo; (60F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;It\u0026rsquo;s a bit embarrassing really. They don\u0026rsquo;t tell you much. They just tell you this is the medication, take this.\u0026rdquo; (72F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Frankly when I came in earlier and I was being treated, nobody ever mentioned osteoporosis to me. At the hospital, not even once.\u0026rdquo; (75M, AS)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eInevitability of diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I knew it would happen. So I went along with it because I felt okay. I\u0026rsquo;ve had worse things happen.\u0026rdquo; (80F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I just thought add it to the list. Just add it to the list you know.\u0026rdquo; (71F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Oh look, it wasn\u0026rsquo;t surprising because of the amount of steroids I had to take over the years.\u0026rdquo; (52M, PsA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eChanging identity and loss of confidence\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eDisappointment and shame at loss of function\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I lost my confidence after I smashed my elbow. I lost my confidence. I have to be very honest.\u0026rdquo; (73F, RA)\u0026ldquo;It\u0026rsquo;s all those sorts of things that concern me more because I don\u0026rsquo;t like the idea of becoming incapable.\u0026rdquo; (69M, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;It is quite humiliating that you can\u0026rsquo;t walk normally.\u0026rdquo; (66F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eHypervigilance and anxiety surrounding potential consequences\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I\u0026rsquo;m really scared. I\u0026rsquo;m so stupid. I\u0026rsquo;m scared.\u0026rdquo; (73F, RA)\u0026ldquo;Yes I\u0026rsquo;m worried. Very worried. But now I can\u0026rsquo;t like, I can\u0026rsquo;t go out by myself. Must be someone with me. It\u0026rsquo;s why.. for my age, if I fall, won\u0026rsquo;t be in one piece you see. So I say, I must be very careful. Hold onto someone just in case.\u0026rdquo; (76F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I\u0026rsquo;m not brave anymore. If my head went down first it would be no more, finish. You know?\u0026rdquo; (65F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eSignalling frailty and deteriorating health\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;You are no longer strong as before. This is the new me. Appearance don\u0026rsquo;t look old, but very weak. Even my mum when she was 70 years was better than me.\u0026rdquo; (65F, RA)\u0026ldquo;I wondered why I\u0026rsquo;m so fragile.\u0026rdquo; (60M, RA)\u0026ldquo;It made me feel so old and decrepit. Then I wasn\u0026rsquo;t even as old as I am now so you know.\u0026rdquo; (94F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eComplexities of management in rheumatic disease\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eDissatisfaction with generic management strategies\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;All the doctors say you\u0026rsquo;ve got to exercise, it\u0026rsquo;s good for your bones, but you can\u0026rsquo;t hold anything.. I find it hard with my hands\u0026hellip; I\u0026rsquo;m not exaggerating, but it\u0026rsquo;s frustrating.\u0026rdquo; (71F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;That\u0026rsquo;s what I think with autoimmune conditions. You have to look after people holistically, you know? I always feel like it\u0026rsquo;s self driven. There\u0026rsquo;s no one looking at the big picture.\u0026rdquo; (71F, RA)\u0026ldquo;I didn\u0026rsquo;t know there were other medications, she didn\u0026rsquo;t tell me that I had a choice.\u0026rdquo; (75M, AS)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eExhausted by burden of healthcare\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;You\u0026rsquo;re always consulting for things. When I go, it\u0026rsquo;s never for 5 minutes. No, there\u0026rsquo;s this and that, this and that, this has broken out and we don\u0026rsquo;t even know what it is.\u0026rdquo; (71F, RA) \u0026ldquo;I can\u0026rsquo;t keep up with what I\u0026rsquo;m already supposed to do.\u0026rdquo; (60F, SLE)\u0026ldquo;No, look I can\u0026rsquo;t remember. I deal with about 7 or 8 different doctors.\u0026rdquo; (76M, RA)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eHelplessness balancing competing priorities\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I try and be um, conservative about it, but when it gets to the point, like you\u0026rsquo;re quality of life gets so bad I just have to use it.\u0026rdquo; (71F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Because I\u0026rsquo;ve been trying but I\u0026rsquo;ve been putting on weight since I\u0026rsquo;ve been trying to eat more calcium rich foods.\u0026rdquo; (60F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I have to accept that because I knew the impact of it, but at that time, there\u0026rsquo;s not much choice. Being in pain and not being able to walk. (74M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eNavigating challenges of adherence\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;That\u0026rsquo;s why I\u0026rsquo;ve decided now that I just don\u0026rsquo;t want to have anymore. I just don\u0026rsquo;t think.. I just don\u0026rsquo;t want to do it. If I\u0026rsquo;m very honest with you it\u0026rsquo;s just another pill.\u0026rdquo; (80F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;In terms of strengthening, I got a paper. Sometimes I do that, sometimes I don\u0026rsquo;t. That\u0026rsquo;s what it is now.\u0026rdquo; (65F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I can\u0026rsquo;t walk upstairs and two, everytime I come to the hospital it costs me $60 for a taxi and I\u0026rsquo;m just not going to come two or three times a week to do a bit of exercise which is going to painful anyway.\u0026rdquo; (76M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEmbracing own health autonomy\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eAcceptance and maintaining positivity\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I don\u0026rsquo;t let it stop me. I don\u0026rsquo;t, I\u0026rsquo;m very determined.\u0026rdquo; (80F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Because I don\u0026rsquo;t feel shame or something. Doesn\u0026rsquo;t matter. I\u0026rsquo;ve got this disease, I have to use something like this and I\u0026rsquo;m getting old so there\u0026rsquo;s nothing to be ashamed of.\u0026rdquo; (60M, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I can shower, I can drive my car and I can do everything I want. I don\u0026rsquo;t have to stop you know?\u0026rdquo; (79F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eEmpowering self through proactive decisions\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I was quite proactive when I had my fall because.. I did mention it and gone to a physio and gotten exercises to strengthen up.\u0026rdquo; (60F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;So I\u0026rsquo;m really down to, I\u0026rsquo;ve put in grabrails in the shower, I\u0026rsquo;ve had the shower redone with anti-slip tiles and waterproofed. I\u0026rsquo;ve put out the lawn and I\u0026rsquo;ve got anti-slip pavements.\u0026rdquo; (78F, RA)\u0026ldquo;I like to use a walking stick or a frame. It makes me feel more stable.\u0026rdquo; (77F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;So I\u0026rsquo;m working at the gym on balance as well. More though to get strength in my legs, lower leg work at the gym and stuff like that. Working on balance as well. Like, lunges and stuff like that.\u0026rdquo; (52M, PsA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eInformation seeking to improve health literacy\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I\u0026rsquo;m pretty mindful of my health, always have been. Different things and read up a lot.\u0026rdquo; (71F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;My older sister is a retired surgeon so I learnt a little bit from here.\u0026rdquo; (73F, RA)\u0026ldquo;\u0026hellip;talking to different people, when I was in hospital. They were on something to do with osteoporosis. So I knew a few people that were on it..\u0026rdquo; (77F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eSeeking consolation and advice from others\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;The other thing was there was a lot of ladies there who had gotten to terms with how they were and the changes as you get older. But we seemed to all gravitate and understand because we helped each other along the way. That was pretty good.\u0026rdquo; (80F, SLE)\u0026ldquo;She goes. But she couldn\u0026apos;t do it without a walker and she gets really good exercise and holds her up. Yeah, she\u0026apos;s really very good and she\u0026apos;s marvellous. She\u0026apos;s so much better now that she\u0026apos;s able to get good exercise.\u0026rdquo; (80F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;\u0026hellip;.maybe some discussion clinics, for people to gather and chat.\u0026rdquo; (66F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEntrusting care in healthcare providers\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eBuilding positive therapeutic relationships\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I trust my GP. I trust the medical practice you see. I absolutely trust them, like I trust Dr (name) and Dr (name). I\u0026rsquo;m so grateful to them for taking care of me, all these years.\u0026rdquo; (75M, AS)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;No, I can\u0026rsquo;t complain about my rheumatologist because he checks everything. He\u0026rsquo;s been remarkable, honestly.\u0026rdquo; (77F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;We\u0026rsquo;ve got to know each other know that I can ring Dr (name) anytime I want if I\u0026rsquo;m worried about something. She knows that I won\u0026rsquo;t bother her if it\u0026rsquo;s not important. So we do have a very good working relationship there.\u0026rdquo; (76M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eTrusting of recommendations\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I go to a doctor who\u0026rsquo;s trained and qualified and recommends what I hope is the right advice.\u0026rdquo; (69M, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Yeah so I just follow instructions, what to take, when to eat you know to try to stop any effects when you take medications. It\u0026rsquo;s working for the moment.\u0026rdquo; (60F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I never miss any of those. I write everything down.\u0026rdquo; (78F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003ePreference for specialist care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I think rheumatologist. They have more experience on this type of thing. They know more about this and that\u0026rsquo;s it.\u0026rdquo; (74F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Actually when you\u0026rsquo;re diagnosed with rheumatoid arthritis, they already see the specialist right? So I think the specialist should do it.\u0026rdquo; (60M, RA)\u0026ldquo;Well I see (name) for the rheumatoid arthritis so him I suppose. He\u0026rsquo;d know the most about the arthritis and prednisone and the effect on bone.\u0026rdquo; (69M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eExpectations for proactive care\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eAdvocacy for health promotion and education\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;If they have more information they can give it to the patient in a way the patient can understand. That would be more helpful.\u0026rdquo; (67F, RA)\u0026ldquo;Maybe pass on more information to the GPs as well. Because that\u0026rsquo;s there it starts basically. Before we come to clinics or hospitals.\u0026rdquo; (75M, AS)\u0026ldquo;But I guess just to bring awareness that there is a high risk. That you have a condition that is prone to break your bones.\u0026rdquo; (74M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eAssumptions on clinician responsibility\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;\u0026hellip;not just waiting for a patient to come in and say they\u0026rsquo;ve come in because they\u0026rsquo;ve been told they\u0026rsquo;ve got osteoporosis. Or had a fracture.\u0026rdquo; (75M, AS)\u0026ldquo;Look well, there\u0026rsquo;s always to-ing and fro-ing with letters to each other. Surely somebody can just take responsibility and mention it to the other one, so everybody knows.\u0026rdquo; (69M, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;I always feel like it\u0026rsquo;s self-driven. There\u0026rsquo;s no one looking at the big picture.\u0026rdquo; (71F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eFrustrated with accessibility to care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;But they said look, you\u0026rsquo;ll be waiting forever. The wait is too long.\u0026rdquo; (71F, RA)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;But it\u0026rsquo;s just sort of like, next patient, next patient. They spend time with you when you\u0026rsquo;ve got a problem but it\u0026rsquo;s not the same as before.\u0026rdquo; (59M, PsA)\u0026ldquo;It\u0026rsquo;s a shame they don\u0026rsquo;t do at (name) because I can drive there and there\u0026rsquo;s plenty of parking. Very difficult. And to go on the bus it\u0026rsquo;s too hard. Going up and down I\u0026rsquo;m too scared I might fall.\u0026rdquo; (79F, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 32px;\"\u003e\n \u003cp\u003eSimplifying early diagnosis and management\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 67px;\"\u003e\n \u003cp\u003e\u0026ldquo;I really think they should make a program for it. I mean, we do the mammogram and the bowel cancer program.\u0026rdquo; (72F, SLE)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Something that\u0026apos;s a little bit more integrated and a bit more automated.\u0026rdquo; (66F, RA)\u0026ldquo;Oh.. maybe if it could be picked up in blood tests that people do. Because I do a blood test every 3 months.\u0026rdquo; (65M, RA)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-rheumatology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"brhm","sideBox":"Learn more about [BMC Rheumatology](http://bmcrheumatol.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/brhm/default.aspx","title":"BMC Rheumatology","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Qualitative, osteoporosis, falls, rheumatic disease","lastPublishedDoi":"10.21203/rs.3.rs-7708865/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7708865/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e\u003cp\u003eTo describe the perspectives of patients with chronic inflammatory rheumatic diseases (CIRD) regarding osteoporosis, falls and fractures in order to develop a theoretical framework to explain healthcare perceptions and key impacts, which may guide development of consumer-focussed interventions to improve care.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003ePatients\u0026thinsp;\u0026ge;\u0026thinsp;50 years with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis or systemic lupus erythematosus and a concurrent diagnosis of osteoporosis were purposively sampled from two rheumatology services based in metropolitan tertiary hospital to participate in a focus group or interview. Transcripts were thematically analysed.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eSix main themes were identified: Ambivalence towards diagnoses, changing identity and loss of confidence, complexities of management in rheumatic disease, embracing own health autonomy, entrusting care in healthcare providers and expectations for proactive care.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003ePatients living with CIRD may be ambivalent to osteoporosis, falls and fractures, but also fearful of the consequences to their identity and function. They value proactive care from their clinicians that addresses osteoporosis and falls prevention. Many feel their educational needs around these risks are unmet and look to clinicians for support that empowers them, fosters acceptance and acknowledges the potential threat these conditions post to independence and identity. Future interventions should incorporate patient-centred educational models and provide clinicians with the resources needed to offer meaningful preventive care.\u003c/p\u003e","manuscriptTitle":"The perspectives and experiences of osteoporosis, falls and fracture prevention in patients with chronic inflammatory rheumatic disease: A qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-29 07:28:14","doi":"10.21203/rs.3.rs-7708865/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-04-09T22:36:00+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"28647461313128956327126088053965189493","date":"2026-04-06T13:15:31+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"172036785219072959262723853057426050256","date":"2026-04-05T21:52:54+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"201382292664973878108273019740136760093","date":"2026-03-31T12:47:05+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-23T19:41:50+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"285893741487869738970447806134358451917","date":"2025-10-17T02:25:10+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-14T15:32:41+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-09-30T17:31:21+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-27T06:51:55+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-27T06:50:14+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Rheumatology","date":"2025-09-25T04:59:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-rheumatology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"brhm","sideBox":"Learn more about [BMC Rheumatology](http://bmcrheumatol.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/brhm/default.aspx","title":"BMC Rheumatology","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"acaf7e0d-3363-4d62-84b4-4722c4b3fb64","owner":[],"postedDate":"October 29th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-10-29T07:28:15+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-29 07:28:14","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7708865","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7708865","identity":"rs-7708865","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}