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Flow chart of the recruitment process. PMR – Polymyalgia Rheumatica. GP – General Practitioner. PCRN – Primary Care Research Network. NHS – National Health Service. ONS – Office for National Statistics. PIS – Patient Information Sheet. EMR – Electronic Medical Record.
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Polymyalgia Rheumatica (PMR) is the commonest inflammatory condition seen in older patients in primary care. To date, however, research has been focused on secondary care cohorts rather than primary care where many patients are exclusively managed. This two year prospective inception cohort study of PMR patients will enable us to understand the ful...
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Background
The aim was to characterise the sociodemographic, general health and polymyalgia rheumatica (PMR)-specific features of participants in a large inception cohort of patients with PMR diagnosed in UK primary care. Methods
Patients (n = 739) with a new diagnosis of PMR were referred into the study and mailed a questionnaire detailing their g...
Background:
Scientific competencies are of great importance for physicians; not only for conducting reliable research, but also for patient care. However, there is growing concern that a lack of scientific competencies among physicians may lead to a deterioration in the quality on biomedical research. This study aims at assessing medical students'...
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Citations
... The PMR Study is an inception cohort of people diagnosed with PMR in general practice. The study has been described in detail elsewhere (7)(8)(9). Briefly, 739 participants were referred (June 2012 -June 2014) to the study team by their general practitioner when a new diagnosis of PMR was made. Potential participants were sent a baseline questionnaire. ...
... Nicolosi et al (19) found 70% of men and 60% of women aged 40 to 80 years in the UK reported themselves to be sexually active. Sexual relationships therefore appear to be less relevant in our sample, but the age groups and definitions of sexual activity are not directly 9 comparable. In those reporting being sexually active or that sexual relationships were relevant, the proportions reporting an impact were higher in the current study than in the general population in men (46% vs 31%), but lower in women (35% vs 43%), although again definitions were not directly comparable. ...
Objective
The aim was to determine the impact of PMR on intimate and sexual relationships over time.
Methods
The PMR Cohort study is a longitudinal study of patients with incident PMR in English primary care. Participants were sent questionnaires about their PMR symptoms, treatments and overall health, including an item about how their PMR symptoms affected intimate and sexual relationships. The proportions reporting the relevance of intimate and sexual relationships, the effect of PMR on these relationships and the associations with PMR symptoms and general health were explored.
Results
The baseline survey was completed by 652 of 739 patients (response 90.1%), with 446 of 576 (78.0%) responding at 2 years. The mean age of respondents was 72.4 years, and 62.2% were female. At baseline, 363 of 640 (56.7%) respondents reported that intimate and sexual relationships were not relevant to them. One hundred and thirteen of 277 (40.8%) respondents reported that PMR had a large effect on intimate relationships. This proportion decreased over time in those responding to 12- and 24-month surveys, but continued to be associated with younger age, male gender, worse PMR symptoms, poorer physical function and worse mental health.
Conclusion
Intimate and sexual relationships are increasingly recognized as important for healthy ageing, and health professionals should consider this as part of a holistic approach to the management of PMR.
Study registration
UKCRN ID16477.
... The PMR Cohort study is an inception cohort of UK primary care patients diagnosed with PMR between 2012 and 2014 and initially followed up by mail over a 2-year period [14][15][16]. In this paper, we report on a further follow-up, between 4.5 and 6.5 years after the initial PMR diagnosis, in which we describe the characteristics of those with prolonged treatment and try to understand the reasons for this. ...
... Full details of the PMR Cohort study have been published previously [14][15][16]. Briefly, 652 individuals were recruited from general practices across England at the time of their PMR diagnosis . ...
... The justification for the sample size recruited to this cohort has been described previously [15] and was based on the likely numbers of people diagnosed with PMR in UK primary care each year. The present study presents data from an additional follow-up, in which all those who had not withdrawn their consent and whose general Sara Muller et al. practice agreed to continue participation were invited to continue to complete a final questionnaire. ...
Objectives
Polymyalgia rheumatica (PMR) is a common inflammatory condition in older adults, characterised by bilateral hip and shoulder pain and stiffness. Reducing oral glucocorticoids, classically used for up to two years are the mainstay of treatment. This study considers the factors early in the disease course that might be associated with prolonged treatment.
Methods
652 people with incident PMR were recruited from English general practices (2012–2014). Participants completed seven questionnaires over two years (used to allocate people to pain/stiffness trajectories) and a further long-term follow-up questionnaire (LTFUQ) a median of 5.16 years after diagnosis. Characteristics of those still taking and having ceased glucocorticoids were described and compared using Kruskal-Wallis and chi-square and t-tests as appropriate.
Results
Of the 197 people completing the LTFUQ, 179 people reported ever having taken glucocorticoids. Of these, 40.1% were still on treatment with a mean daily dose of 5 (1.5,9) mg. People still taking glucocorticoids were more likely to be older (72.5 vs 70.2 years, p = 0.035), live alone (31.8% v 15.0%, p = 0.01), and have self-managed their glucocorticoid dose (39.1% versuss 11.0%, p < 0.0001). They were also more likely to belong to a pain-stiffness trajectory class with sustained symptoms.
Conclusions
PMR is not always a time limited condition. Few patient characteristics are associated with prolonged treatment early in the disease course, but those who are older and have sustained symptoms may be at greater risk. Whilst accurate prediction is not possible yet, clinicians should carefully monitor people with PMR to manage symptoms and reduce cumulative glucocorticoid dose.
... Full details of study procedures have been reported previously [11]. Briefly, individuals with newly diagnosed PMR were recruited from UK general practice and sent a postal questionnaire [11]. ...
... Full details of study procedures have been reported previously [11]. Briefly, individuals with newly diagnosed PMR were recruited from UK general practice and sent a postal questionnaire [11]. The baseline survey collected information on patient socio-demographics, general health and PMR symptoms [11]. ...
... Briefly, individuals with newly diagnosed PMR were recruited from UK general practice and sent a postal questionnaire [11]. The baseline survey collected information on patient socio-demographics, general health and PMR symptoms [11]. Information on treatment was gathered, including glucocorticoid prescription, calcium, and vitamin D prescription, and antiosteoporosis prescription with examples such as bisphosphonates, hormone replacement therapy (HRT) and strontium given [11]. ...
Objectives
Polymyalgia rheumatica (PMR) is a common indication for long-term glucocorticoid treatment leading to an increased risk of osteoporosis and fragility fractures. Guidelines recommend calcium and vitamin D for all patients, as well as anti-resorptive agents for high-risk patients. This study aimed to investigate falls and fragility fracture history and use of medications for osteoporosis in a PMR cohort.
Methods
652 people with incident PMR responded to a postal survey. Self-reported data on falls, fragility fracture history and medication were collected at baseline. Follow up data on fragility fractures (hip, wrist, spine) and falls were collected at 12 and 24 months. Logistic regression was used to assess the association between baseline characteristics and fractures.
Results
Fewer than 50% of respondents received osteoporosis treatments, including supplements. 112 (17.2%) participants reported a fragility fracture at baseline, 72 participants reported a fracture at 12 months, whilst 62 reported a fracture at 24-months. Baseline history of falls was most strongly associated with fracture at 12 (OR 2.35; 95% CI 1.35, 4.12) and 24 months (1.91; 1.05, 3.49) when unadjusted for previous fractures.
Conclusions
Fracture reporting is common in people with PMR. To improve fracture prevention, falls assessment and interventions need to be considered. History of falls could help inform prescribing decisions around medications for osteoporosis. Future research should consider both pharmacological and non-pharmacological approaches to reducing fracture risk.
... The PMR Cohort Study assessed the epidemiology and long-term outcomes of people diagnosed with PMR in primary care [10]. The aim of this analysis was to investigate the reported use and perceived benefit of non-pharmacological and exercise therapies for PMR and the association of these therapies with long-term outcomes. ...
... The PMR Cohort Study has been described in detail elsewhere [10]. Briefly, participants were recruited from 382 GP practices across England, between June 2012 and June 2014. ...
... Users of non-pharmacological therapy tended to be younger (69 vs. 74) and more likely to be female (74% vs 56%) in line with the general population [12]. Compared to studies of people with, rheumatoid arthritis and osteoarthritis rates of non-pharmacological therapy use is lower (41% vs. 98% and 99%, respectively) [10], which may reflect a better developed evidence base in other conditions. The demographics of the osteoarthritis patients surveyed were similar in terms of age (70 vs. 72) and gender (72% vs. 64% female); however, the rheumatoid population were significantly younger (57 vs. 72) and more likely to be female (80% vs. 64%), In comparison, research into non-pharmacological therapies for PMR is sparse, with just two non-randomised small scale trials into Chinese herbal therapies reported in the literature [13,14]. ...
Polymyalgia rheumatica (PMR) is common. The mainstay of treatment, glucocorticoids, are associated with significant adverse effects and many patients remain on high doses for a number of years. Little is known about the use of other, non-pharmacological therapies as adjuncts in PMR. The PMR Cohort Study is an inception cohort study of patients diagnosed with PMR in primary care. This analysis presents data on the use and perceived impact of non-pharmacological therapies from a long-term follow-up survey. Non-pharmacological treatments were classified as either diet, exercise, or complementary therapies. Results are presented as adjusted means, medians, and raw counts where appropriate. One hundred and ninety-seven participants completed the long-term follow-up questionnaire, of these 81 (41.1%) reported using non-pharmacological therapy. Fifty-seven people reported using a form of complementary therapy, 35 used exercise and 20 reported changing their diet. No individual non-pharmacological therapy appeared to be associated with long-term outcomes. The use of non-pharmacological therapies is common amongst PMR patients, despite the paucity of evidence supporting their use. This suggests that people perceive a need for treatment options in addition to standard glucocorticoid regimens. Further research is needed to understand patients’ aims when seeking additional treatments and to strengthen the evidence base for their use so that patients can be guided towards effective options.
... In order to provide an evidence base to understand the wider epidemiology of PMR, the PMR Cohort Study was established in 2012 [8,9]. To our knowledge, this inception cohort of patients with PMR, recruited in England at the time of diagnosis, is the only prospective large-scale study of incident PMR in a primary care setting. ...
... Study procedures and the baseline sample have been described in detail elsewhere [8,9]. Briefly, potential participants were identified when they were diagnosed with PMR by their general practitioner (GP) between June 2012 and June 2014. ...
... Younger age, female gender, lower occupational class, higher levels of pain, anxiety, depression and fatigue and poorer general health and physical functioning at baseline were associated with lower rates of subsequent response (Table 1). PMR and general health characteristics of the sample over time As previously reported [8], the median levels of pain and stiffness at diagnosis were 8 out of 10 ( Table 2). For both symptoms, this fell to 2 out of 10 after the first month and remained low on average over the rest of the follow-up period, but varied greatly at the individual level ( Supplementary Fig. S2, available at Rheumatology online). ...
Objectives:
To investigate potential subgroups of primary care-diagnosed patients with PMR based on self-reported pain and stiffness severity over time.
Methods:
A total of 652 people with an incident PMR diagnosis were recruited from English general practices and completed a baseline postal questionnaire. They were followed up with a further six questionnaires over a 2 year period. A total of 446 people completed the 2 year follow-up. Pain and stiffness were reported on a 0-10 numerical rating scale. Latent class growth analysis was used to estimate the joint trajectories of pain and stiffness over time. A combination of statistical and clinical considerations was used to choose the number of clusters. Characteristics of the classes were described.
Results:
Five clusters were identified. One cluster represented the profile of 'classical' PMR symptoms and one represented sustained symptoms that may not be PMR. The other three clusters displayed a partial recovery, a recovery followed by worsening and a slow, but sustained recovery. Those displaying classical PMR symptoms were in better overall health at diagnosis than the other groups.
Conclusion:
PMR is a heterogeneous condition, with a number of phenotypes. The spectrum of presentation, as well as varying responses to treatment, may be related to underlying health status at diagnosis. Future research should seek to stratify patients at diagnosis to identify those likely to have a poor recovery and in need of an alternative treatment pathway. Clinicians should be aware of the different experiences of patients and monitor symptoms closely, even where there is initial improvement.
... According to our best knowledge, there are only five reports concerning the incidence and prevalence of PMR in Italy. The absence of an exemption code for this disease, the absence of a specific code for the population studies as it is for the N20 code in the United Kingdom, the absence of a project involving GPs and rheumatologists (as the PMR cohort study) [42], are all limiting factors. ...
Objectives:
to evaluate incidence and prevalence rates of polymyalgia rheumatica (PMR) in Italy, depending on the epidemiological methodology used from time to time.
Materials and methods:
A comprehensive literature search in MEDLINE and EMBASE was carried out. The following search terms were used: polymyalgia rheumatica, incidence, prevalence, epidemiology, general practitioner, family medicine, Italy. A search was also carried out in Google scholar using the search phrase: epidemiology of polymyalgia rheumatica in Italy. The period considered was between 1970 and March 2019. All articles containing data on incidence and prevalence of PMR in Italy were read in full. Reviews and non-original manuscripts were excluded as well as all the studies containing incidence and prevalence rates of giant cell arteritis (GCA), unless clearly distinct from data related to patients with PMR alone (isolated and pure PMR).
Results:
Five articles corresponded to inclusion and exclusion criteria. Two articles were excluded as they were review articles, and three articles were excluded because there were not clear data on incidence and prevalence rates of isolated PMR. Three articles reported data on the annual incidence of PMR (two of them published by the same group of investigators); two articles reported prevalence data. In one article, both incidence and prevalence were calculated. The annual rate of incidence of PMR was between 0.12 and 2.3 cases/1000 inhabitants aged over 50 years. In the two studies publishing prevalence data, they varied from 0.37% to 0.62%. The differences in incidence and prevalence rates were related to several factors such as the different set of diagnostic criteria used for identifying patients or the diagnostic difficulty for patients with atypical presentations, specifically those without raised erythrocyte sedimentation rate (ESR). In the study with higher annual rate of incidence and higher prevalence of PMR, the collaboration between general practitioner (GP) and the out-of-hospital public rheumatologist resulted in significantly different data than in the other studies. All the five articles presented data from monocentric cohorts.
Conclusion:
Very few Italian studies addressed the epidemiology of PMR. The contribution of a specific professional figure represented by the out-of-hospital public rheumatologist, present in the Italian National Health System and absent in other countries, can make the Italian experience unique in its kind.
... This study used baseline data from a prospective observational inception cohort of PMR patients recruited in UK primary care (Muller et al., 2012). Patients aged 18 years and older were recruited at the time of PMR diagnosis from 382 research-active general practices across England. ...
... Anatomical location of pain and stiffness were elicited using body manikins, up to a maximum of 44 body areas (Figure 1) (Muller et al., 2012). In addition to manikin data, participants were asked to rate the severity of their pain and stiffness using two separate 0-10 numerical rating scale (NRS), with 0 indicating no pain/ stiffness and 10 the worst pain/stiffness imaginable. ...
... The total number of pain/stiffness sites for each participant was reported in quartiles (pain: 0-9, 10-15, 16-22, 23-44 sites; stiffness: 0-5, 6-11, 12-19, 20-44 sites). The manikin data were also used to dichotomise participants into those who had experienced bilateral pain/stiffness in the shoulder/hips using relevant manikin locations [shoulder areas: either locations 3 or 28 (left) and 7 or 24 (right); hip areas: either 44 or 47 (left) and 45 or 46 (right)] ( Muller et al., 2012) (Figure 1). Pain and stiffness severity scores were dichotomised at the median [low (0-7) versus high (8-10)] in order to make results more clinically meaningful. ...
We aimed to examine the association between pain, stiffness and fatigue in newly diagnosed polymyalgia rheumatica (PMR) patients using baseline data from a prospective cohort study. Fatigue is a known, but often ignored symptom of PMR. Newly diagnosed PMR patients were recruited from general practice and mailed a baseline questionnaire. This included a numerical rating scale for pain and stiffness severity, manikins identifying locations of pain and stiffness and the FACIT-Fatigue questionnaire. A total of 652 PMR patients responded (88.5%). The mean age of responders was 72.6 years (SD 9.0) and the majority were female (62.0%). Manikin data demonstrated that bilateral shoulder and hip pain and stiffness were common. The mean fatigue score (FACIT) was 33.9 (SD 12.4). Adjusted regression analysis demonstrated that a higher number of pain sites (23–44 sites) and higher pain and stiffness severity were associated with greater levels of fatigue. In newly diagnosed PMR patients, fatigue was associated with PMR symptom severity.
... 173 Polymyalgia rheumatica Polymyalgia rheumatica (PMR), an inflammatory musculoskeletal disorder prevalent in the elderly population, classically manifests as bilateral hip and shoulder girdle stiffness. 45,200,201 Given the inflammation and associated pain and disability in PMR, in addition to the chronic nature of the condition and long-term glucocorticoids therapy, it is probable that patients will experience a decrease in QOL. 45,202,203 The prevalence of current depressive symptoms is indicated to be approximately 15% and is significantly associated with female sex, younger age, current PMR symptoms, and present comorbidities, including acid reflux and diabetes. ...
Research in the past two decades has revolutionized our understanding of depressive illnesses. Proinflammatory cytokines have become a point of interest in the interconnecting areas of neuropsychiatric and autoimmune diseases. The cytokine hypothesis of depression suggests that pro‐inflammatory cytokines play a primary role in the mediation of the pathophysiological characteristics of major depression, in which an inflammatory process may be induced by external and internal stressors such as psychological and inflammatory diseases, respectively. The higher prevalence of depression, particularly in patients with chronic autoimmune connective tissue disorders (CTDs) suggests that depression may present a dysfunctional adaptation of cytokine‐induced sickness, which could manifest in times of an exacerbated activation of the innate immune system. Inflammation is thought to contribute to the development of clinical depression through its ability to induce sickness behaviors corresponding to the neurovegetative features of depression, through the dysregulation of the hypothalamic‐pituitary‐adrenal (HPA) axis, alterations in neurotransmitter synthesis and reuptake and through its involvement in the neuroprogression pathways. This review explores the complex interrelationships in which inflammatory responses alter neuroendocrine and neuropsychological regulation contributing to depressive symptoms in CTDs. The prevalence and characteristics of depression, and its correlation to the levels of inflammatory cytokines and disease activity among different CTDs will be reviewed.
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... Two prospective observational cohort studies contributed raw data to further assess the domain match and feasibility of candidate instruments for pain, stiffness, and physical function: the Melbourne Predictors of Relapse in PMR (MPR-PMR) study, and The PMR Cohort 10 . Specifics pertaining to each of these studies' designs and baseline patient demographics are outlined in Table 1 11,12 . ...
Objective
To report the progress of the OMERACT Polymyalgia Rheumatica (PMR) Working Group in selecting candidate instruments for a core outcome measurement set.
Methods
A systematic literature review identified outcomes measured and instruments used in PMR studies, and a respondent survey and raw data analysis assessed their domain match and feasibility.
Results
Candidate instruments were identified for pain (VAS/NRS), stiffness (VAS/NRS and duration) and physical function (HAQ-DI/MHAQ). Domain match and feasibility assessments were favourable, however validation in PMR was lacking.
Conclusion
Further assessment of candidate instruments is required prior to recommending a PMR core outcome measurement set.
... A total of 652 patients participated in this study. The methods of the study have been presented elsewhere (Muller et al., 2012;2016), but briefly newly diagnosed PMR patients (according to the British Society of Rheumatology guidelines) were referred into the study by their GP. Patients were mailed a baseline questionnaire, which included symptom severity and current treatment, sociodemographics and patients' information needs for their condition. ...
Aim
The aim of this study was to assess the provision of information to, and seeking of information by, patients newly diagnosed with polymyalgia rheumatica (PMR) in primary care.
Background
PMR is an inflammatory rheumatological condition of older people that can be treated with long-term oral glucocorticoids. Management usually requires the patient to understand the potential complications of treatment and the disease, as well as involvement in reducing treatment dose. This may be complex for patients to understand.
Method
Data are taken from the baseline phase of the PMR Cohort study, which recruited newly diagnosed patients with PMR from UK primary care. Participants provided information on their PMR symptoms, general health and sociodemographics. They also completed items regarding information provision by their doctor at diagnosis, its usefulness and their own search for information.
Findings
A total of 652 people responded to the baseline survey. In all, 399 (62.7%) had received written information from their doctor; 237 (98%) found it useful; 265 (42.9%) would have liked more information; and 311 (48.4%) sought out more information. Those who were not given information and did not seek it out tended to be older and have poorer internet access.
Information provided at diagnosis to patients with PMR is useful, but more than a third did not receive any. This is concerning when PMR requires self-management and vigilance for red flags. Doctors should make use of the resources already available to them to support patients and should specifically ensure that these are available to more elderly patients and those without internet access.
