Prevalence and Risk of Falls and Fractures in the Idiopathic Inflammatory Myopathies: A Cross-Sectional Study of 470 Patients

Abstract

Introduction

Patients with idiopathic inflammatory myopathies (IIMs) can develop marked muscle weakness, which predisposes them to falls and injuries. We examined the prevalence of falls and associated fractures, assistive device use, and bone-protective therapy use among those reporting a fracture history. This analysis focuses on secondary prevention strategies in a high-risk population.

Methods

A cross-sectional survey was developed and distributed by Myositis Support and Understanding, a patient-led advocacy organization, to members of its group. Patients aged ≥ 18 years with a diagnosis of an IIM (dermatomyositis, antisynthetase syndrome, polymyositis, inclusion body myositis [IBM], immune-mediated necrotizing myopathy, or overlap myositis [OM]) were eligible to participate. Ordinal logistic regression was utilized to identify variables independently associated with falls.

Results

Of 470 respondents, 79.8% reported falling once since diagnosis, and 57.0% fell within the past year. Fall-related fractures since diagnosis were reported by 121 participants (25.7%), of whom 61 (50.4%) experienced ≥ 2 fractures and 39 (32.2%) required surgical treatment. Among those with fall-related fractures, nearly half (47.9%) reported not receiving any dietary supplements or pharmacologic therapies (e.g., calcium, vitamin D, or bisphosphonates) to reduce bone loss or prevent future fractures. Use of braces/splints or mobility aids was reported by 18.2% and 77.7% of participants with fall-related fractures, respectively. Regression analyses identified mobility aid usage as being associated with a significantly increased fall risk (odds ratio [OR], 3.1; P < 0.001). Relative to dermatomyositis, fall risk was significantly higher among participants with IBM (OR, 2.5; P = 0.002) and polymyositis (OR, 2.0; P = 0.037) and lower for participants with antisynthetase syndrome (OR, 0.5; P = 0.038).

Conclusions

All IIMs can lead to marked weakness, with varying individual risks of falls. Multidisciplinary care, with an emphasis on primary and secondary prevention of falls and fractures, is critical to improving outcomes and preserving quality of life in these patient populations.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40744-026-00829-2.

Plain Language Summary

People with idiopathic inflammatory myopathies, a group of diseases that cause muscle inflammation and weakness, often experience significant challenges that can affect their daily activities and make them more prone to falls and injuries. A survey conducted by Myositis Support and Understanding asked its members with idiopathic inflammatory myopathies about their experience with falls, bone fractures, and treatments for their condition. The results showed that 79.8% of the 470 survey respondents had fallen at least once since their diagnosis and 57.0% had fallen in the past year. Among the 25.7% of people who experienced fall-related fractures, half of them had multiple fractures, and nearly one-third needed surgery. Nearly half of the people who had fractures from falls said they were not taking any vitamins, supplements, or medications—like calcium, vitamin D, or bone-strengthening drugs—to help protect their bones or prevent more fractures. To help with mobility, 18.2% of people used braces or splints, and 77.7% used mobility aids such as walkers or canes. People with inclusion body myositis and people with polymyositis had a higher risk of falling compared with those with dermatomyositis. Although all types of idiopathic inflammatory myopathies can cause serious muscle weakness, some may increase the risk of falls more than others. Preventing falls and fractures is critical for improving the quality of life of people with idiopathic inflammatory myopathies.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40744-026-00829-2.

Key Summary Points

Why carry out this study?

Idiopathic inflammatory myopathies (IIMs), such as inclusion body myositis (IBM), feature skeletal muscle weakness that may predispose patients to falls and fall-related fractures.

This study examined the prevalence of falls and associated fractures, assistive device usage, and preventative measures in adults with IIM and evaluated whether factors such as age, sex, specific diagnosis, and mobility aid use were associated with fall risk.

What was learned from the study?

This study documented a high rate of falls and fall-related fractures in patients with IIMs, with fall risk being significantly higher among patients with IBM and polymyositis relative to dermatomyositis.

Additionally, the study identified a gap in dietary and pharmacologic bone-strengthening measures among patients with falls and fractures.

Overall, the results of the study suggest that patients with IIMs, and especially those with IBM or polymyositis, are at an increased risk of falling, and they underscore the need for primary and secondary fall and fracture prevention efforts in this patient population.

Introduction

Idiopathic inflammatory myopathies (IIMs) are a heterogeneous group of autoimmune neuromuscular diseases (NMDs) that can affect the muscles, joints, lungs, and skin [1, 2]. Classification of IIMs in adults includes dermatomyositis (DM), antisynthetase syndrome (ASyS), immune-mediated necrotizing myopathy (IMNM), mixed connective tissue disease (CTD)/overlap myositis (i.e., myositis associated with CTD; henceforth referred to as OM), polymyositis (PM), and inclusion body myositis (IBM) [2–7]. Although IIMs vary based on clinical presentation and underlying pathophysiology, they share common features of skeletal muscle weakness that may predispose toward an increased risk of falls [2–4, 6, 7]. Studies have demonstrated an elevated risk of falls in IBM [8–12], although the determination of fall risk in other IIMs is lacking. Additionally, the degree and distribution of muscle weakness differ among IIMs, with DM [2], PM [13], ASyS [7], and IMNM [3] displaying mainly proximal muscle weakness and IBM presenting primarily with quadriceps weakness and atrophy and asymmetric deep finger flexor weakness [4].

Key causes of falls in patients with IBM and possibly other IIMs include knee buckling, gait abnormalities, and loss of balance [9–12, 14]. Gait abnormalities associated with muscle weakness include bilateral pelvic drop giving the appearance of a “waddling gait” due to gluteus medius and minimus atrophy or breakdown [15], “stiff leg gait” associated with knee buckling or quadriceps weakness [16], and foot drop and a steppage gait resulting from ankle dorsiflexor weakness [17]; these gait abnormalities may cause significant instability, particularly when transitioning from standing still to walking and when navigating uneven terrain [10, 14]. Falls may lead to serious injury (e.g., bone fracture), increased disability, loss of independence, further muscle atrophy due to prolonged inactivity, anxiety related to a fear of future falls, reduced longevity, and a diminished quality of life [9–11, 14, 18]. Patients with IIMs are at an increased risk of fracture, likely due in part to an elevated prevalence of osteoporosis or osteopenia in this patient population [19–26]. Although corticosteroid therapy may contribute to reduced bone mineral density (BMD) [19, 20, 24], several studies have demonstrated reduced BMD and an increased risk of fractures in patients with IIMs independent of cumulative corticosteroid use, suggesting that other factors (e.g., systemic inflammation, muscle disuse) also play a role [19–23, 26]. In patients with NMDs, a multidisciplinary approach that includes monitoring of BMD, increased intake of calcium and vitamin D, bone-targeted pharmacotherapy, and weight-bearing aerobic and strengthening exercise is recommended to prevent and treat bone loss [27, 28]. Nonpharmacologic management should also include fall prevention strategies.

There is a lack of robust data on the prevalence and risk for falls and subsequent fractures in patients with IIMs, both overall and by subtype. Similarly, limited information is available on patients’ use of assistive devices and preventative measures, including braces or splints to stabilize joints and prevent contractures, as well as dietary or pharmacologic treatments to optimize bone strength and reduce fracture risk. Therefore, we conducted a cross-sectional survey of patients with various IIMs to examine the prevalence of falls and associated fractures, assistive device usage, and preventative measures. We then investigated factors associated with increased fall and fracture risk in patients with IIMs to help guide future fall prevention efforts.

Methods

Study Design and Participants

This cross-sectional study consisted of an anonymous survey developed to assess the prevalence of falls and fractures, mobility aid use, and preventative care in adults with IIMs. The survey was distributed via Research Electronic Data Capture (REDCap) to members of Myositis Support and Understanding (MSU), a nonprofit organization founded to support patients with IIM through education, advocacy, financial assistance, and patient-centered research worldwide. Patients aged 18 years and older with a self-reported physician diagnosis of IIM (DM, ASyS, PM, IBM, IMNM, or OM) were eligible for inclusion. Patients who self-reported other forms of IIM were excluded. Between May 3 and May 20, 2022, participants responded with data captured in REDCap in a de-identified manner. Ethics approval for the study was obtained from the Institutional Review Board at the University of Texas Southwestern Medical Center (reference number STU-2021–0308; approved June 22, 2021). Participants provided consent electronically at the start of the online survey, before any study questions were shown, by proceeding past an information page that clearly described the study purpose, voluntary nature of participation, and data handling. The information page explained that the survey would ask about the impact of myositis on multiple aspects of life, that participation was voluntary, that responses would remain confidential, that there was no compensation, and that participants could skip questions or exit at any time, and proceeding to the survey questions served as acknowledgment that their responses could be used for research purposes. The study was conducted in accordance with the Declaration of Helsinki and its amendments. The full text of the survey can be found in the electronic supplementary material.

Survey

Demographic and diagnostic information collected from participants included age, sex, race, specific IIM diagnosis, specialist provider for IIM management, and time elapsed since diagnosis. Participants’ self-reported physical function was assessed via the Patient-Reported Outcomes Measurement Information System-Physical Function (PROMIS-PF) Short Form 10a v2.0 test, an assessment of an individual’s ability to perform physical activities [29]. Participants rated each of 10 items on a scale from 1 to 5, and individual question scores were totaled and converted to T-scores (range, 20–60, with higher scores indicating better function) derived from a US population with a mean score of 50 [30, 31]. All other questions in the survey were generated specifically for this study. Participants were asked whether they used mobility aids or prefabricated or custom-fitted upper body (above hip) or lower body (below hip) orthotics. All participants were asked to report their history of falling (since diagnosis and within the past year) and how many of those falls (if any) led to a fracture. Additionally, participants were asked if they were using dietary supplements or prescription bone-targeted pharmacotherapy to prevent bone loss and fractures. This analysis focuses primarily on self-reported fracture history and the use of bone health therapies independent of medication.

Statistical Analysis

Demographic and clinical data were summarized using descriptive statistics. Ordinal logistic regression was performed to assess the association between IIM type and fall prevalence (within the past year and since diagnosis). DM was chosen as the reference group due to its high prevalence and typically more proximal distribution of muscle weakness versus PM or IBM. Similar analyses were performed to assess the associations between fall risk and the following factors: mobility aid use, age, and sex. The reference group for age was 18−29 years. Data were presented as unadjusted odds ratios (ORs) with accompanying 95% CIs and P values. Statistical significance was set at P < 0.05. All statistical analyses were performed using Stata software, version 14 (StataCorp, College Station, TX, USA).

Results

Participants

Surveys were sent via e-mail to the MSU membership list of 2400 people as well as via postings in online support groups (both a general group for those with myositis and a separate group specifically for those with IBM). Overall, 581 participants returned completed surveys, and 470 (80.9%) met enrollment criteria and were included in the final analysis. The majority of participants (70.9%) were female, and most were 60 years of age or older (Table 1). Rheumatology (50.0%) and neurology (24.5%) were the two most common physician specialties reported by patients as their primary managing provider for their IIM diagnosis. The most frequently reported IIM diagnoses were IBM and DM. Across participants, the mean (SD) PROMIS-PF T-score was 33.8 (8.3; 95% CI, 33.1, 34.6). Additional clinical parameters collected via the survey can be found in Table S1 of the electronic supplementary material.

Table 1.

Demographics and diagnosis

Characteristic	Participants (N = 470) n (%)
Age, years
19–29	7 (1.5)
30–39	30 (6.4)
40–49	65 (13.8)
50–59	92 (19.6)
60–69	139 (29.6)
70–79	111 (23.6)
80 +	25 (5.3)
NR	1 (0.2)
Sex
Female	333 (70.9)
Male	134 (28.5)
NR	3 (0.6)
Race
White	410 (87.3)
Non-White	60 (12.7)
Highest level of education
Less than a high school diploma	8 (1.7)
High school degree or equivalent	39 (8.3)
Associate degree	52 (11.1)
Some college, no degree	105 (22.3)
Professional degree	16 (3.4)
Bachelor’s degree	143 (30.4)
Master’s degree	78 (16.6)
Doctorate	24 (5.1)
NR	5 (1.1)
Myositis type
Antisynthetase syndrome	43 (9.1)
Dermatomyositis	128 (27.2)
Inclusion body myositis	193 (41.1)
Immune-mediated necrotizing myopathy	35 (7.5)
Overlap myositis	19 (4.0)
Polymyositis	52 (11.1)
Specialty of myositis care provider
Rheumatologist	235 (50.0)
Neurologist	115 (24.5)
Neuromuscular specialist	46 (9.8)
Primary care provider	34 (7.2)
Other	14 (3.0)
Immunologist	11 (2.3)
None	11 (2.3)
NR	4 (0.9)

NR not reported

Fall and Fracture Prevalence

A total of 375 participants (79.8%) reported a fall since their IIM diagnosis, with 268 (57.0%) reporting at least one fall within the last year (Table 2). Among the 121 (25.7%) participants who reported a fall-related fracture since diagnosis, 61 (50.4%) reported two or more such fractures. The most common fracture locations after IIM diagnosis were “other lower extremity” (49.6%), ankle (24.0%), “other upper extremity” (22.3%), and spine (19.0%). Nearly one-third (32.2%) of participants with fall-related fractures sustained at least one fracture that was severe enough to require surgery.

Table 2.

Fall and fracture prevalence

	Participants (N = 470) n (%)
Number of falls since diagnosis
0	92 (19.6)
1	44 (9.4)
2	47 (10.0)
3	30 (6.4)
4	36 (7.6)
5 +	218 (46.4)
NR	3 (0.6)
Number of falls within the last year
0	201 (42.8)
1	78 (16.6)
2	63 (13.4)
3	51 (10.8)
4	30 (6.4)
5 +	46 (9.8)
NR	1 (0.2)
Fall-related fracture since diagnosis
Yes	121 (25.7)
No	346 (73.6)
NR	3 (0.64)
Number of fall-related fractures since diagnosisa
1	56 (46.3)
2	29 (24.0)
3 +	32 (26.4)
NR	4 (3.3)
Fracture locationa
Ankle	29 (24.0)
Elbow	2 (1.7)
Hand	9 (7.4)
Hip	8 (6.6)
Other lower extremity	60 (49.6)
Other upper extremity	27 (22.3)
Pelvis	3 (2.5)
Spine	23 (19.0)
Wrist	14 (11.6)
Fractures requiring surgerya
Yes	39 (32.2)
No	82 (67.8)

^an out of 121. NR, not reported

Bone Health Management in Patients with Fracture History

Among the 470 surveys analyzed, 121 participants (25.7%) reported experiencing one or more fall-related fractures. Of these, 58 participants (47.9%) reported not receiving any dietary supplements or prescription medications, such as calcium, vitamin D, or bisphosphonates, aimed at preventing bone loss or future fractures (Table 3). The most common bone-protective measures were calcium and vitamin D.

Table 3.

Bone health and assistive device use among patients with fall-related fractures

	Participants (N = 121) n (%)a
Bone-protective therapy usage
None	58 (47.9)
Vitamin D	46 (38.0)
Calcium	38 (31.4)
Bisphosphonate	13 (10.7)
Denosumab	4 (3.3)
Other osteoporosis medication	3 (2.5)
Teriparatide	1 (0.8)
Brace or splint usage
No	99 (81.8)
Yes	22 (18.2)
Custom lower	9 (7.4)
Prefabricated lower	6 (5.0)
Prefabricated upper	4 (3.3)
Custom upper	3 (2.5)
Mobility aid usage
No	27 (22.3)
Yes	94 (77.7)
Cane or crutch	49 (40.5)
Rollator	48 (39.7)
Walker	35 (28.9)
Wheelchair	28 (23.1)
Power chair	22 (18.2)
Scooter	18 (14.9)
Other	7 (5.8)

^aDenominator includes only those reporting ≥ 1 fall-related fracture (N = 121). Multiple responses were possible for medication and device use

Of participants with one or more fall-related fractures, most (81.8%) reported not using any form of brace or splint (Table 3). Braces or splints below the hip were used slightly more commonly than those above the hip. Of 121 participants, 94 (77.7%) reported regularly using assistive devices, with rollators and canes or crutches being the most frequently used (Table 3).

Regression Analysis of Fall Risk Factors Since Diagnosis

Regression analyses explored risk factors for falls since diagnosis (Fig. 1). Age and sex were not significantly associated with fall risk among survey respondents. Among the individual IIMs, IBM and PM were associated with a significantly higher fall risk, and ASyS was significantly associated with a lower fall risk, relative to DM. Use of mobility aids was significantly associated with a ~ threefold increased risk of falls (OR [95% CI], 3.1 [1.976, 4.940], P < 0.001).

Fig. 1.

Regression analysis of risk factors for falls since diagnosis. Based on ordinal logistic regression. ASyS antisynthetase syndrome, CI confidence interval, DM dermatomyositis, IBM inclusion body myositis, IMNM immune-mediated necrotizing myopathy, OM overlap myositis, OR odds ratio, PM polymyositis

Additional regression analyses were performed with the number of falls as the independent variable and age, gender, diagnosis, and mobility aid usage as covariates. The addition of age as a covariate increased the fall risk for IBM versus DM (OR [95% CI], 2.04 [1.528, 2.570], P < 0.0001) and the addition of the other covariates increased it further (OR [95% CI], 2.53 [1.391, 4.579], P = 0.002) However, although age appeared to be strongly associated with falls in this population, the association nearly disappeared after including myositis diagnosis as a covariate. The inclusion of the other covariates further dampened the association with age.

Discussion

This survey of a large group of self-identified patients with IIM found a high rate of falls, with 80% of respondents reporting at least one fall since their diagnosis and nearly 60% reporting a fall within the past year. These values appear to reflect an elevated fall risk associated with IIM when compared with global data across all age groups and among older adults [32, 33]. In 2020, 27.6% of US adults aged ≥ 65 years reported a fall in the previous year according to the US Centers for Disease Control [34]; this rate is more than twofold lower than the rate reported in the current survey of patients with IIM (57.0%). In addition, global data from the Global Burden of Disease Study estimate an age-standardized incidence of 2296 per 100,000 per year (approximately 2.3%) for all fractures in 2019 [35]; in contrast, 25.7% of participants in the current survey reported having sustained a fall-related fracture since their diagnosis, with almost one-third of these participants requiring surgery. Even allowing for longer accumulation time in this cohort, this higher incidence suggests a markedly elevated fracture burden. Consistent with a high fall risk, average physical function in patients with IIM was below the US population mean.

Participants with IBM were 2.5 times more likely to report falling compared with those with DM, regardless of age. The tendency of IBM to affect knee extensors [4] versus the more proximal pattern of muscle weakness in DM [2], PM [13], ASyS [7], and IMNM [3] may contribute to a higher fall risk in IBM. Several studies have documented high rates of falls in patients with IBM [8–12], including one study that reported higher rates of in-hospital falls among patients with IBM compared with those with DM or PM [12]. Participants with PM also had a significantly elevated fall risk relative to those with DM, which may be related to greater overall lower extremity and proximal weakness in PM [13]; as well as more severe weakness of the neck flexors [36], which can increase fall risk by impairing proprioception and postural stability [37], and of the hip adductors and hip flexors [36], which may lead to Trendelenburg gait and increased fall risk [15].

Interestingly, patients who reported using mobility aids were at a significantly higher risk of falling versus those who did not. A possible explanation is that patients with more severe weakness are more likely to require mobility aids and are therefore also at higher risk of falls. Consistent with this hypothesis, the frequency of falls has been reported to correlate with the severity of walking impairment in patients with IBM irrespective of mobility device usage [9]. Another study in patients with IBM found that knee extension strength decreased significantly as patients required more supportive gait assistive devices [10]. Mobility devices are essential for many patients with IIMs to aid in their mobility and reduce the risk of falls as the disease progresses. Although some patients may experience challenges with device usage [38, 39], proper fitting and training can minimize these challenges and allow for improved stability and support.

Fewer than 20% of patients reported using any prosthetic or brace. Both custom-fitted and prefabricated lower extremity braces may enhance stability and reduce contractures in patients with NMDs [40]. However, a systematic review on the efficacy of orthotic devices for managing knee instability in NMD and central nervous system disorders identified a paucity of high-quality evidence [41], and published research in IIM is limited to a single small (N = 9) study in patients with IBM [42]. In these patients, provision of a stance control orthosis led to an observed slower gait and a greater step width, and patients perceived the device as providing stability and safeguarding against falls. Larger, randomized trials in patients with IIM are warranted to further explore the potential benefits of orthotics with respect to stability and fall risk.

Immunosuppressive therapy is commonly recommended for many patients with IIMs [2, 3, 6, 7]; however, such therapies are generally ineffective in patients with IBM and are not part of current treatment guidelines for this population [4]. In earlier studies and in clinical experience, a notable proportion of patients with IBM received treatments typically used for other forms of myositis, particularly during periods of diagnostic uncertainty or in cases with overlapping autoimmune features [43]. This highlights the need for greater clarity in diagnostic pathways and tailored management approaches, particularly given the increased risk of falls and fractures observed in this population.

Almost half of survey respondents (47.9%) with previous fractures related to falls reported not taking preventative treatments such as dietary calcium and bone-targeted prescription pharmacotherapies. This observation suggests a gap in the application of standard bone-protection strategies, even among those with confirmed fragility events. Consistent with these results, a recent European survey identified a need for greater awareness and medical education regarding management of bone strength in NMDs, as well as improved implementation of bone-strengthening strategies in this patient population [44]. These findings emphasize the need for improved fracture prevention protocols across IIM care. The high prevalence of falls and resulting fractures in patients with IIM highlights a need for increased emphasis on use of preventative measures shown to improve gait, education regarding appropriate and correct use of mobility aids, fall prevention education, and pharmacologic care shown to decrease the risk of fracture in patients with and without prolonged steroid treatment. Additionally, early treatment of IIMs to prevent progression of muscle weakness may be critical to reduce the risk of falls and adverse sequelae.

We acknowledge that by grouping individuals with five or more falls and those with three or more fall-related fractures together we are unable to report the exact number of falls or fracture for each IIM type. However, we believe this approach helps to reduce recall bias, especially in patients with a longer time since diagnosis and a higher number of falls. We also recognize that there are other complications of falls such as soft tissue injury and head trauma that can reduce the quality of life of individuals with IIM. We focused on fractures considering that, due to the nature of the IIMs and the high likelihood of prolonged corticosteroid treatment in this population, the patients in this study would likely be at a higher risk of fall-related fractures compared with other fall-related injuries relative to the general population.

This study was limited by its cross-sectional design, and as such we do not aim to infer any causal relationships or determine incidence. The study only included patients older than 18 years, and it is worth noting that there exists a large pediatric myositis population that could be subject to similar fall risk. Investigation of strategies to reduce fracture risk was limited to dietary supplementation and pharmacologic treatment and did not include nonpharmacologic strategies such as exercise. Data on dosage and duration (beyond ≥ 1 month) of corticosteroid use were not collected. Because these data were self-reported, important clinical parameters (such as BMD, evaluation of disease activity, or affected organs) were not available, and direct comparisons of incidence or annual rates are approximate. Self-report surveys are subject to errors in recall and selection bias, as patients who had fallen more recently or had a more severe disease course may have been more likely to complete the survey. In addition, patients could only access the survey electronically, which may have limited the diversity of the sample population and the generalizability of the results. Although we enrolled patients with a diagnosis of PM, which is included in the current European Alliance of Associations for Rheumatology/American College of Rheumatology classification criteria [5] and was at the time of the survey the diagnosis for many patients, the existence of PM as a unique entity has been questioned recently since the majority of cases can be re-classified as other IIMs [45–48]. Additionally, some survey participants may have been misdiagnosed with IIM and may instead have had nonautoimmune myopathies [49]. The self-reported nature of diagnosis in our survey may have amplified issues around diagnosis, as patients may be recalling older diagnostic labels not yet updated by their clinical teams. However, we believe that our large sample size balances our results against diagnostic uncertainty. Despite the stated limitations, our demographic data are consistent with epidemiologic profiles of IIM in the medical literature, suggesting appropriate population sampling [50–52].

Conclusions

To our knowledge, this study is the first to collect self-reported data on the number of falls and fractures in patients with myositis, revealing that individuals with IBM have the highest incidence of falls and fractures and highlighting the insidious nature of these risks. Results of this survey suggest a gap in appropriate bone-strengthening measures that warrants attention. Additionally, longitudinal studies examining the impact of orthotics, assistive devices, and other preventative measures on the risk of falls and fall-related injuries in patients with IIM would be beneficial. These findings underscore the need among patients with IIM for evidence-based, multidisciplinary care that addresses safe mobility in a personalized framework while incorporating primary and secondary preventative measures.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contributions

Dhruv Nandakumar, Dr. Abhiram R. Bhashyam, Dr. Manuel Lubinus, Lynn Wilson, Jerry Williams, and Dr. Salman Bhai all contributed to the study conception, design, material preparation, and data collection. Dhruv Nandakumar and Dr. Abhiram R. Bhashyam performed the analysis. Dhruv Nandakumar wrote the first draft of the manuscript, and all authors critically reviewed the manuscript for important intellectual content. All authors read and approved the final manuscript.

Funding

No sources of funding were utilized for conduct of this study. Funding for the journal’s Rapid Service Fee was provided by Abcuro, Inc.

Data Availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Conflict of Interest

Dhruv Nandakumar’s new affiliation is Independent Researcher, Dallas, TX, USA. Dr. Abhiram R. Bhashyam, Dr. Manuel Lubinus, Lynn Wilson, Jerry Williams, and Dr. Salman Bhai have nothing to disclose.

Ethics/Ethical Approval

Ethics approval for the study was obtained from the Institutional Review Board at the University of Texas Southwestern Medical Center (reference number STU-2021–0308; approved June 22, 2021). Participants provided consent electronically at the start of the online survey, before any study questions were shown, by proceeding past an information page that clearly described the study purpose, voluntary nature of participation, and data handling. The information page explained that the survey would ask about the impact of myositis on multiple aspects of life, that participation was voluntary, that responses would remain confidential, that there was no compensation, and that participants could skip questions or exit at any time, and proceeding to the survey questions served as acknowledgment that their responses could be used for research purposes. The study was conducted in accordance with the Declaration of Helsinki and its amendments.