Treatment of polymyalgia rheumatica: British Society for Rheumatology guideline scope.

The last British Society for Rheumatology (BSR) guideline on PMR was published in 2009. The guideline needs to be updated to provide a summary of the current evidence for pharmacological and non-pharmacological management of adults with PMR. This guideline is aimed at healthcare professionals in the UK who directly care for people with PMR, including general practitioners, rheumatologists, nurses, physiotherapists, occupational therapists, pharmacists, psychologists and other health professionals. It will also be relevant to people living with PMR and organisations that support them in the public and third sector, including charities and informal patient support groups. This guideline will be developed using the methods and processes outlined in the BSR Guidelines Protocol. Here we provide a brief summary of the scope of the guideline update in development.

The relationship between pain and depression and anxiety in patients with inflammatory arthritis: a systematic review protocol.

Pain is a major challenge for patients with inflammatory arthritis (IA). Depression and anxiety are common comorbidities in IA, associating with worse outcomes. How they relate to pain is uncertain, with existing systematic reviews (a) mainly considering cross-sectional studies, (b) focusing on the relationship between pain and mental health in the context of disease activity/quality of life, and (c) not specifically considering the impact of treating depression/anxiety on pain. This PROSPERO-registered (CRD42023411823) systematic review will address this knowledge-gap by synthesizing evidence to summarise the associations (and potential mediators) between pain and depression/anxiety and evaluate the impact of treating co-morbid depression/anxiety on pain in IA. Relevant databases will be searched, articles screened and their quality appraised (using Joanna Briggs Institute critical appraisal tools) by two reviewers. Eligible studies will include adults with rheumatoid arthritis or spondyloarthritis, be a clinical trial or observational study, and either (a) report the relationship between pain and depression/anxiety (observational studies/baseline trials), or (b) randomise participants to a pharmacological or psychological treatment to manage depression/anxiety with a pain outcome as an endpoint (trials). To synthesise data on the association between pain and depression/anxiety, where available adjusted coefficients from regression models will be pooled in a random-effects meta-analysis. A synthesis without meta-analysis will summarise mediators. To evaluate the impact of treating depression/anxiety on pain, endpoint mean differences between treatment arms will be combined in a random-effects meta-analysis. Through understanding how depression/anxiety contribute to pain in IA, our review has the potential to help optimise approaches to IA pain.

Experiences and care needs of children with long COVID: a qualitative study.

BACKGROUND: Long COVID, the patient-preferred term, describes symptoms persisting after an acute episode of COVID-19 infection. Symptoms in children and young people (CYP) can affect daily routine, with broader impacts on education, health-related quality of life, and social activities, which may have long-term effects on health and wellbeing. AIM: To explore the lived experiences and care needs of CYP with long COVID from the perspectives of CYP with long COVID, their parents, and professionals associated with the care of children and families living with the condition. DESIGN & SETTING: CYP and their parent or carer were invited for interview following participation in a cohort study, which recruited the sample from a primary care setting. METHOD: Interviews were carried out with four CYP with long COVID (all female, aged 10-17 years); three interviews included a parent. Two focus groups were conducted, which included seven professionals involved with care of CYP or long COVID, from a range of disciplines. Interviews and focus groups were transcribed verbatim, and data analysed thematically using constant comparison techniques. RESULTS: The three main themes presented are as follows: living with long COVID; uncertainty surrounding long COVID; and seeking help for symptoms. CONCLUSION: Long COVID can severely impact the lives of CYP and their families. CYP and their families need to be listened to by professionals and have any uncertainties acknowledged. It is imperative that agencies working with them understand the condition and its impact, and are able to offer support where needed.

Analgesic prescribing in patients with inflammatory arthritis in England: observational studies in the Clinical Practice Research Datalink.

OBJECTIVES: Despite little evidence that analgesics are effective in inflammatory arthritis (IA), studies report substantial opioid prescribing. The extent this applies to other analgesics is uncertain. We undertook a comprehensive evaluation of analgesic prescribing in patients with IA in the Clinical Practice Research Datalink Aurum to evaluate this. METHODS: From 2004 to 2020, cross-sectional analyses evaluated analgesic prescription annual prevalence in RA, PsA and axial spondyloarthritis (axSpA), stratified by age, sex, ethnicity, deprivation and geography. Joinpoint regression evaluated temporal prescribing trends. Cohort studies determined prognostic factors at diagnosis for chronic analgesic prescriptions using Cox proportional hazards models. RESULTS: Analgesic prescribing declined over time but remained common: 2004 and 2020 IA prescription prevalence was 84.2/100 person-years (PY) (95% CI 83.9, 84.5) and 64.5/100 PY (64.2, 64.8), respectively. In 2004, NSAIDs were most prescribed (56.1/100 PY; 55.8, 56.5), falling over time. Opioids were most prescribed in 2020 (39.0/100 PY; 38.7, 39.2). Gabapentinoid prescribing increased: 2004 prevalence 1.1/100 PY (1.0, 1.2); 2020 prevalence 9.9/100 PY (9.7, 10.0). Most opioid prescriptions were chronic (2020 prevalence 23.4/100 PY [23.2, 23.6]). Non-NSAID analgesic prescribing was commoner in RA, older people, females and deprived areas/northern England. Conversely, NSAID prescribing was commoner in axSpA/males, varying little by deprivation/geography. Peri-diagnosis was high-risk for starting chronic opioid/NSAID prescriptions. Prognostic factors for chronic opioid/gabapentinoid and NSAID prescriptions differed, with NSAIDs having no consistently significant association with deprivation (unlike opioids/gabapentinoids). CONCLUSION: IA analgesic prescribing of all classes is widespread. This is neither evidence-based nor in line with guidelines. Peri-diagnosis is an opportune moment to reduce chronic analgesic prescribing.

Applying the consolidated framework for implementation research to evaluate the community rapid intervention service.

BACKGROUND: Developed in 2019, the Community Rapid Intervention Service (CRIS) is a community intervention service aiming to prevent hospital admissions. CRIS provides a response within two hours to patients with sub-acute medical needs in their usual place of residence. This evaluation aimed to identify challenges and facilitators to implementation of the service, with a view to informing future service development, optimising patient care and disseminating learning to other areas looking to implement similar services. METHODS: This study used the Consolidated Framework for Implementation Research (CFIR) as an evaluation framework. We conducted semi-structured interviews with local healthcare system leaders, clinicians that worked within the CRIS, and clinicians who interfaced with the CRIS. The CFIR was used to guide data collection and analysis. Two Community of Practice (CoP) meetings were held to gather stakeholders' perspectives of the evaluation. RESULTS: Three key themes were identified from the analysis of 13 interviews: contextual factors influencing implementation, service identity and navigating complexity. Contextual factors such the influence of the Covid 19 pandemic upon health services and the expansion of the CRIS were discussed by participants. The adaptability of the service was deemed both a facilitator and challenge of implementation. Ways to build-on and improve the existing CRIS model were suggested. CONCLUSION: This evaluation has shown that the CRIS may need to be redefined with clarity provided as to how the service interfaces with other urgent and planned care offered in acute, primary, community and social services. Structuring the evaluation around the CFIR was helpful in identifying facilitators and challenges that influenced the implementation of the CRIS.

Test-retest reliability of pain VAS/NRS, stiffness VAS/NRS, HAQ-DI and mHAQ in polymyalgia rheumatica: An OMERACT study.

OBJECTIVE: To examine the test-retest reliability of four measurement instruments in polymyalgia rheumatica (PMR): pain severity visual analogue scale (VAS) / numerical rating score (NRS), stiffness severity VAS/NRS, the Health Assessment Questionnaire-Disability Index (HAQ-DI) and the modified Health Assessment Questionnaire (mHAQ). METHOD: Two prospectively collected datasets were used. All participants had a diagnosis of PMR and only those with stable disease were included in analyses. Measurement instruments were administered twice, with a testing interval of two to six weeks. The intra-class correlation coefficient (ICC) was calculated using a two-way mixed effects model looking for absolute agreement. ICC values of 0.8-0.9 were deemed representative of good test-retest reliability, whilst values >0.9 were representative of excellent test-retest reliability. RESULTS: From the first dataset, 38 participants were analysed. The ICC between baseline and 2 weeks for pain VAS, stiffness VAS, HAQ-DI and mHAQ were 0.84, 0.82, 0.92 and 0.92 respectively. From the second dataset, 58 participants were included in the analysis for pain NRS, 59 for stiffness NRS and 78 for mHAQ. The ICC between baseline and follow-up for pain NRS, stiffness NRS and mHAQ were 0.80, 0.83 and 0.87 respectively. CONCLUSION: Pain severity VAS/NRS, stiffness severity VAS/NRS, HAQ-DI and mHAQ all demonstrate good to excellent test-retest reliability in a PMR patient population.

Symptom patterns and life with post-acute COVID-19 in children aged 8-17 years: a mixed-methods study protocol.

BACKGROUND: While there is a substantial body of knowledge about acute COVID-19, less is known about long-COVID, where symptoms continue beyond 4 weeks. AIM: To describe longer-term effects of COVID-19 infection in children and young people (CYP) and identify their needs in relation to long-COVID. DESIGN & SETTING: This study comprises an observational prospective cohort study and a linked qualitative study, identifying participants aged 8-17 years in the West Midlands of England. METHOD: CYP will be invited to complete online questionnaires to monitor incidences and symptoms of COVID-19 over a 12-month period. CYP who have experienced long-term effects of COVID will be invited to interview, and those currently experiencing symptoms will be asked to document their experiences in a diary. Professionals who work with CYP will be invited to explore the impact of long-COVID on the wider experiences of CYP, in a focus group. Descriptive statistics will be used to describe the incidence and rates of resolution of symptoms, and comparisons will be made between exposed and non-exposed groups. Logistic regression models will be used to estimate associations between candidate predictors and the development of long-COVID, and linear regression will be used to estimate associations between candidate predictors. Qualitative data will be analysed thematically using the constant comparison method. CONCLUSION: This study will describe features and symptoms of long-COVID and explore the impact of long-COVID within the lives of CYP and their families, to provide better understanding of long-COVID and inform clinical practice.

Development and psychometric evaluation of the PMR-Impact Scale: a new patient reported outcome measure for polymyalgia rheumatica.

OBJECTIVES: PMR causes pain, stiffness and disability in older adults. Measuring the impact of the condition from the patient's perspective is vital to high-quality research and patient-centred care, yet there are no validated patient-reported outcome measures (PROMs) for PMR. We set out to develop and psychometrically evaluate a PMR-specific PROM. METHODS: Two cross-sectional postal surveys of people with a confirmed diagnosis of PMR were used to provide data for field testing and psychometric evaluation. A total of 256 participants completed the draft PROM. Distribution of item responses was examined, and exploratory factor analysis and Rasch analysis were used to inform item reduction, formation of dimension structure and scoring system development. Some 179 participants completed the PROM at two time points, along with comparator questionnaires and anchor questions. Test-retest reliability, construct validity and responsiveness were evaluated. RESULTS: Results from the field-testing study led to the formation of the PMR-Impact Scale (PMR-IS), comprising four domains (symptoms, function, psychological and emotional well-being, and steroid side effects). Construct validity and test-retest reliability met accepted quality criteria for each domain. There was insufficient evidence from this study to determine its ability to detect flares/deterioration, but the PMR-IS was responsive to improvements in the condition. CONCLUSION: The PMR-IS offers researchers a new way to assess patient-reported outcomes in clinical studies of PMR. It has been developed robustly, with patient input at every stage. It has good construct validity and test-retest reliability. Further work is needed to fully establish its responsiveness and interpretability parameters, and to assess its real-world clinical utility.

Rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis epidemiology in England from 2004 to 2020: An observational study using primary care electronic health record data.

Background: Contemporary data on rheumatoid arthritis (RA), psoriatic arthritis (PsA) and axial spondyloarthritits (SpA) epidemiology in England are lacking. This knowledge is crucial to planning healthcare services. We updated algorithms defining patients with diagnoses of RA, PsA, and axial SpA in primary care and applied them to describe their incidence and prevalence in the Clinical Practice Research Datalink Aurum, an electronic health record (EHR) database covering ∼20% of England. Methods: Algorithms for ascertaining patients with RA, axial SpA, and PsA diagnoses validated in primary care EHR databases using Read codes were updated (to account for the English NHS change to SNOMED CT diagnosis coding) and applied. Updated diagnosis and synthetic disease-modifying anti-rheumatic drug code lists were devised by rheumatologists and general practitioners. Annual incidence/point-prevalence of RA, PsA, and axial SpA diagnoses were calculated from 2004 to 2020 and stratified by age/sex. Findings: Point-prevalence of RA/PsA diagnoses increased annually, peaking in 2019 (RA 0·779% [95% confidence interval (CI) 0·773, 0·784]; PsA 0·287% [95% CI 0·284, 0·291]) then falling slightly. Point-prevalence of axial SpA diagnoses increased annually (except in 2018/2019), peaking in 2020 (0·113% [95% CI 0·111, 0·115]). RA diagnosis annual incidence was higher between 2013-2019 (after inclusion in the Quality and Outcomes Framework, range 49·1 [95% CI 47·7, 50·5] to 52·1 [95% CI 50·6, 53·6]/100,000 person-years) than 2004-2012 (range 34·5 [95% CI 33·2, 35·7] to 40·0 [95% CI 38·6, 41·4]/100,000 person-years). Increases in the annual incidence of PsA/axial SpA diagnosis occurred following new classification criteria publication. Annual incidence of RA, PsA and axial SpA diagnoses fell by 40·1%, 67·4%, and 38·1%, respectively between 2019 and 2020, likely reflecting the COVID-19 pandemic's impact on their diagnosis. Interpretation: Recorded RA, PsA, and axial SpA diagnoses are increasingly prevalent in England, underlining the importance of organising healthcare services to provide timely, treat-to-target care to optimise the health of >1% of adults in England. Funding: National Institute for Health and Care Research (NIHR300826).

Primary care for people with severe mental illness and comorbid obstructive airways disease: a qualitative study of patient perspectives with integrated stakeholder feedback.

OBJECTIVES: To explore patient and stakeholder perspectives on primary respiratory care for people with severe mental illness (SMI) and comorbid obstructive airways disease (OAD). DESIGN: Qualitative, semistructured qualitative interviews were undertaken with a purposive sample of people with a diagnosis of SMI (bipolar illness, schizophrenia, affective disorder with psychosis) and comorbid asthma or chronic obstructive pulmonary disease. Transcribed data were analysed using an interpretive phenomenological approach. Study results were discussed with stakeholders. SETTING: Eight UK general practices. PARTICIPANTS: 16 people aged 45-75 years, with SMI and comorbid asthma or chronic obstructive pulmonary disease, were interviewed. Twenty-one people, four with lived experience of SMI and seventeen health/social care/third sector practitioners, participated in discussion groups at a stakeholder event. RESULTS: Participants described disability and isolation arising from the interplay of SMI and OAD symptoms. Social support determined ease of access to primary care. Self-management of respiratory health was not person-centred as practitioners failed to consider individual needs and health literacy. Participants perceived smoking cessation impossible without tailored support. Less than half of the practices facilitated personalised access to timely primary care and continuity. Overall, there was a reliance on urgent care if service adaptations and social support were lacking. The stakeholder group expressed concern about gaps in care, the short-term funding of community organisations and fear of loss of benefits. Potential solutions focused on supported navigation of care pathways, relational continuity, individual and community asset building and the evolving social prescriber role. CONCLUSION: This study suggests that despite UK guidelines and incentives to optimise physical healthcare, primary care fails to consistently deliver integrated biopsychosocial care for patients with SMI and OAD. Collaborative, personalised care that builds social capital and tailors support for self-management is needed, alongside service-level interventions to enhance access to healthcare for patients with comorbid SMI and OAD.

Outcomes Measured in Polymyalgia Rheumatica and Measurement Properties of Instruments Considered for the OMERACT Core Outcome Set: A Systematic Review.

OBJECTIVE: To systematically identify the outcome measures and instruments used in clinical studies of polymyalgia rheumatica (PMR) and to evaluate evidence about their measurement properties. METHODS: Searches based on the MeSH term "polymyalgia rheumatica" were carried out in 5 databases. Two researchers were involved in screening, data extraction, and risk of bias assessment. Once outcomes and instruments used were identified and categorized, key instruments were selected for further review through a consensus process. Studies on measurement properties of these instruments were appraised against the COSMIN-OMERACT (COnsensus-based Standards for the selection of health Measurement Instruments-Outcome Measures in Rheumatology) checklist to determine the extent of evidence supporting their use in PMR. RESULTS: Forty-six studies were included. In decreasing order of frequency, the most common outcomes (and instruments) used were markers of systemic inflammation [erythrocyte sedimentation rate (ESR), C-reactive protein (CRP)], pain [visual analog scale (VAS)], stiffness (duration in minutes), and physical function (elevation of upper limbs). Instruments selected for further evaluation were ESR, CRP, pain VAS, morning stiffness duration, and the Health Assessment Questionnaire. Five studies evaluated measurement properties of these instruments, but none met all of the COSMIN-OMERACT checklist criteria. CONCLUSION: Measurement of outcomes in studies of PMR lacks consistency. The critical patient-centered domain of physical function is poorly assessed. None of the candidate instruments considered for inclusion in the core outcome set had high-quality evidence, derived from populations with PMR, on their full range of measurement properties. Further studies are needed to determine whether these instruments are suitable for inclusion in a core outcome measurement set for PMR.

Feasibility and Face Validity of Outcome Measures for Use in Future Studies of Polymyalgia Rheumatica: An OMERACT Study.

OBJECTIVE: To survey participants with polymyalgia rheumatica (PMR) to evaluate the face validity, acceptability, and domain match of proposed candidate outcome measures. METHODS: A structured, online, anonymous survey was disseminated by patient support groups through their networks and online forums. The candidate outcome measures comprised (1) visual analog scale (VAS) and numerical rating score (NRS) to assess pain; (2) VAS, NRS, and duration to assess stiffness; (3) the modified Health Assessment Questionnaire and Health Assessment Questionnaire Disability Index to assess physical function; and (4) C-reactive protein and erythrocyte sedimentation rate to assess inflammation. Free-text answers were analyzed using descriptive thematic analysis to determine respondents' views of the candidate instruments. RESULTS: Seventy-eight people with PMR from 6 countries (UK, France, USA, Canada, Australia, and New Zealand) participated in the survey. Most respondents agreed candidate instruments were acceptable or "good to go." Free-text analysis identified 5 themes that participants considered inadequately covered by the proposed instruments. These related to (1) the variability, context, and location of pain; (2) the variability of stiffness; (3) fatigue; (4) disability; and (5) the correlation of inflammatory marker levels and severity of symptoms, sometimes reflecting disease activity and other times not. CONCLUSION: Participants reported additional aspects of their experience that are not covered by the proposed instruments, particularly for the experience of stiffness and effect of fatigue. New patient-reported outcome measures are required to increase the relevance of results from clinical trials to patients with PMR.

Response to diagnosis of pre-diabetes in socioeconomically deprived areas: a qualitative study.

BACKGROUND: Diabetes prevention is a key priority for the NHS, with a particular focus on populations at highest risk. The NHS Diabetes Prevention Programme (NHS DPP) has been introduced, offering a course of dietary and lifestyle education to individuals with pre-diabetes. However, concerns about the NHS DPP include: (1) the possible unintended consequences of labelling more people with a 'pre-condition'; (2) the possibility of worsening health inequalities as people in socioeconomically deprived areas tend to access behaviour-change programmes less readily; (3) the appropriateness of an intervention focused on individuals versus population-wide public health policy interventions. AIM: To explore the experience of diagnosis of pre-diabetes, and understand the barriers and facilitators to uptake of the NHS DPP for people living in socioeconomically deprived areas. DESIGN & SETTING: A qualitative study was undertaken. Participants with pre-diabetes were recruited from practices serving socioeconomically deprived areas of Sheffield, UK. METHOD: Semi-structured interviews were conducted and continued until data saturation (23 participants). Thematic analysis of data was undertaken. RESULTS: Both healthcare context and an individual's personal and community context shaped response to diagnosis and likelihood of engaging with the NHS DPP. Patient activation was a useful concept in understanding response. Whether or not people participated in the NHS DPP, being diagnosed with pre-diabetes tended to provoke some degree of dietary change and did not cause significant anxiety for most. However, there were multiple barriers to engaging with the NHS DPP for this patient group. CONCLUSION: Diagnosing pre-diabetes can provoke an individual positive response, but the sociocultural environment often limits an individual's ability to engage with the NHS DPP or make lifestyle change.

Toward a Core Outcome Measurement Set for Polymyalgia Rheumatica: Report from the OMERACT 2018 Special Interest Group.

OBJECTIVE: To report the progress of the Outcome Measures in Rheumatology (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 [visual analog scale/numerical rating scale (VAS/NRS)], stiffness (VAS/NRS and duration), and physical function (Health Assessment Questionnaire-Disability Index/modified Health Assessment Questionnaire). Domain match and feasibility assessments were favorable; however, validation in PMR was lacking. CONCLUSION: Further assessment of candidate instruments is required prior to recommending a PMR core outcome measurement set.

Assessment of the face validity, feasibility and utility of a patient-completed questionnaire for polymyalgia rheumatica: a postal survey using the QQ-10 questionnaire.

BACKGROUND: The development of a patient-reported outcome measure (PROM) for polymyalgia rheumatica (PMR), a condition that causes pain, stiffness and disability, is necessary as there is no current validated disease-specific measure. Initial literature synthesis and qualitative research established a conceptual framework for the condition along with a list of symptoms and effects of PMR that patients felt were important to them. These findings were used to derive the candidate items for a patient-completed questionnaire. We aim to establish the face validity of this initial "long form" of a PROM. METHODS: People with a current or previous diagnosis of PMR were recruited both from the community and from rheumatology clinics. They were asked to complete the PMR questionnaire along with the QQ-10 questionnaire, which is a measure used to assess the face validity, feasibility and utility of patient healthcare questionnaires. RESULTS: A total of 28 participants with an age range of 59-85 years and a length of time since diagnosis from 4 months to 18 years completed the QQ-10. The overall mean "value" score was 79% (SD 12), and the mean "burden" score was 21% (SD 18). The free-text comments were analysed thematically and were found to focus on layout, content, where in the clinical pathway the questionnaire would be most beneficial, specific items missing and other areas for consideration. CONCLUSIONS: The high mean value score and low burden score indicate that the questionnaire has good face validity and is acceptable to patients. The questionnaire now needs to undergo further psychometric evaluation and refinement to develop the final tool for use in clinical practice and research.

The OMERACT Core Domain Set for Outcome Measures for Clinical Trials in Polymyalgia Rheumatica.

OBJECTIVE: To inform development of a core domain set for outcome measures for clinical trials in polymyalgia rheumatica (PMR), we conducted patient consultations, a systematic review, a Delphi study, and 2 qualitative studies. METHODS: Domains identified by 70% or more of physicians and/or patients in the Delphi study were selected. The conceptual framework derived from the 2 qualitative research studies helped inform the meaning of each domain and its relationship to the others. The draft core domain set was refined by further discussion with patients and physicians who had participated in the Delphi study. At the Outcome Measures in Rheumatology (OMERACT) 2016, the domains were discussed and prioritized by 8 breakout groups. Formal voting took place at the end of the workshop and in the final plenary. RESULTS: Ninety-three percent of voters in the final plenary agreed that the inner core of domains considered mandatory for clinical trials of PMR should consist the following: laboratory markers of systemic inflammation, pain, stiffness, and physical function. Patient's global and fatigue were considered important but not mandatory (outer core). The research agenda included psychological impact, weakness, physical activity, participation, sleep, imaging, and health-related quality of life. CONCLUSION: This core domain set was considered sufficiently well-defined that the next step will be to apply the OMERACT Filter 2.0 Instrument Selection Algorithm to select candidate instruments for a subsequent "deeper dive" into the data. This will allow instruments to be mapped onto each of our core domains to derive a core outcome set for PMR.

"I suddenly felt I'd aged": a qualitative study of patient experiences of polymyalgia rheumatica (PMR).

OBJECTIVES: To explore patient experiences of living with, and receiving treatment for, PMR. METHODS: Semi-structured qualitative interviews, with 22 patients with PMR recruited from general practices in South Yorkshire. Thematic analysis using a constant comparative method, ran concurrently with the interviews and was used to derive a conceptual framework. RESULTS: 5 Key themes emerged highlighting the importance of: (1) pain, stiffness and weakness, (2) disability, (3) treatment and disease course, (4) experience of care, (5) psychological impact of PMR. Patients emphasised the profound disability experienced that was often associated with fear and vulnerability, highlighting how this was often not recognised by health care professionals. Patients' experiences also challenge medical convention, particularly around the concept of 'weakness' as a symptom, the use of morning stiffness as a measure of disease activity and the myth of full resolution of symptoms with steroid treatment. Treatment decisions were complex, with patients balancing glucocorticoid side effects against persistent symptoms. CONCLUSIONS: Patients often described their experience of PMR in terms of disability rather than focussing on localised symptoms. The associated psychological impact was significant. PRACTICE IMPLICATIONS: Recognising this is key to achieving shared understanding, reaching the correct diagnosis promptly, and formulating a patient-centred management plan.