A meta-analysis of previous falls and subsequent fracture risk in cohort studies.

The relationship between self-reported falls and fracture risk was estimated in an international meta-analysis of individual-level data from 46 prospective cohorts. Previous falls were associated with an increased fracture risk in women and men and should be considered as an additional risk factor in the FRAX® algorithm. INTRODUCTION: Previous falls are a well-documented risk factor for subsequent fracture but have not yet been incorporated into the FRAX algorithm. The aim of this study was to evaluate, in an international meta-analysis, the association between previous falls and subsequent fracture risk and its relation to sex, age, duration of follow-up, and bone mineral density (BMD). METHODS: The resource comprised 906,359 women and men (66.9% female) from 46 prospective cohorts. Previous falls were uniformly defined as any fall occurring during the previous year in 43 cohorts; the remaining three cohorts had a different question construct. The association between previous falls and fracture risk (any clinical fracture, osteoporotic fracture, major osteoporotic fracture, and hip fracture) was examined using an extension of the Poisson regression model in each cohort and each sex, followed by random-effects meta-analyses of the weighted beta coefficients. RESULTS: Falls in the past year were reported in 21.4% of individuals. During a follow-up of 9,102,207 person-years, 87,352 fractures occurred of which 19,509 were hip fractures. A previous fall was associated with a significantly increased risk of any clinical fracture both in women (hazard ratio (HR) 1.42, 95% confidence interval (CI) 1.33-1.51) and men (HR 1.53, 95% CI 1.41-1.67). The HRs were of similar magnitude for osteoporotic, major osteoporotic fracture, and hip fracture. Sex significantly modified the association between previous fall and fracture risk, with predictive values being higher in men than in women (e.g., for major osteoporotic fracture, HR 1.53 (95% CI 1.27-1.84) in men vs. HR 1.32 (95% CI 1.20-1.45) in women, P for interaction = 0.013). The HRs associated with previous falls decreased with age in women and with duration of follow-up in men and women for most fracture outcomes. There was no evidence of an interaction between falls and BMD for fracture risk. Subsequent risk for a major osteoporotic fracture increased with each additional previous fall in women and men. CONCLUSIONS: A previous self-reported fall confers an increased risk of fracture that is largely independent of BMD. Previous falls should be considered as an additional risk factor in future iterations of FRAX to improve fracture risk prediction.

UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study).

BACKGROUND: The UK's "Getting It Right First Time" programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes. AIM: To profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia. METHODS: Two online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data. RESULTS: Survey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: 'a troublesome label', 'a heavy burden' and 'a low priority'. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK. CONCLUSION: This study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.

The effect of COVID-19 public health restrictions on the health of people with musculoskeletal conditions and symptoms: the CONTAIN study.

OBJECTIVE: To quantify the change in quality of life, disease-specific indicators, health and lifestyle before and during the COVID-19 pandemic among people with musculoskeletal diagnoses and symptoms. METHODS: We undertook an additional follow-up of two existing UK registers involving people with axial spondyloarthritis (axSpA) or psoriatic arthritis (PsA) and participants in a trial in the UK who had regional pain and were identified at high risk of developing chronic widespread pain. Participants completed the study questionnaire between July and December 2020, throughout which time there were public health restrictions in place. RESULTS: The number of people taking part in the study was 1054 (596 axSpA, 162 PsA, 296 regional pain). In comparison with their previous (pre-pandemic) assessment, there was an age-adjusted significant, small decrease in quality of life measured by EQ-5D [-0.020 (95% CI -0.030, -0.009)] overall and across all population groups examined. This was primarily related to poorer mental health and pain. There was a small increase in fibromyalgia symptoms, but a small decrease in sleep problems. There was a small deterioration in axSpA disease activity, and disease-specific quality of life and anxiety in PsA participants. Predictors of poor quality of life were similar pre- and during the pandemic. The effect of lockdown on activity differed according to age, gender and deprivation. CONCLUSION: Important lessons include focusing on addressing anxiety and providing enhanced support for self-management in the absence of normal health care being available, and awareness that all population groups are likely to be affected.

Evaluating Household Transmission of Invasive Group A Streptococcus Disease in the United States Using Population-based Surveillance Data, 2013-2016.

Using population-based surveillance data, we quantified the secondary invasive group A Streptococcus disease risk among household contacts. The disease risk in the 30 days postexposure to an index-case patient was highest among individuals aged ≥65 years, versus the annual background incidence of all ages.

The Changing Epidemiology of Candidemia in the United States: Injection Drug Use as an Increasingly Common Risk Factor-Active Surveillance in Selected Sites, United States, 2014-2017.

BACKGROUND: Injection drug use (IDU) is a known, but infrequent risk factor on candidemia; however, the opioid epidemic and increases in IDU may be changing the epidemiology of candidemia. METHODS: Active population-based surveillance for candidemia was conducted in selected US counties. Cases of candidemia were categorized as IDU cases if IDU was indicated in the medical records in the 12 months prior to the date of initial culture. RESULTS: During 2017, 1191 candidemia cases were identified in patients aged >12 years (incidence: 6.9 per 100 000 population); 128 (10.7%) had IDU history, and this proportion was especially high (34.6%) in patients with candidemia aged 19-44. Patients with candidemia and IDU history were younger than those without (median age, 35 vs 63 years; P < .001). Candidemia cases involving recent IDU were less likely to have typical risk factors including malignancy (7.0% vs 29.4%; relative risk [RR], 0.2 [95% confidence interval {CI}, .1-.5]), abdominal surgery (3.9% vs 17.5%; RR, 0.2 [95% CI, .09-.5]), and total parenteral nutrition (3.9% vs 22.5%; RR, 0.2 [95% CI, .07-.4]). Candidemia cases with IDU occurred more commonly in smokers (68.8% vs 18.5%; RR, 3.7 [95% CI, 3.1-4.4]), those with hepatitis C (54.7% vs 6.4%; RR, 8.5 [95% CI, 6.5-11.3]), and in people who were homeless (13.3% vs 0.8%; RR, 15.7 [95% CI, 7.1-34.5]). CONCLUSIONS: Clinicians should consider injection drug use as a risk factor in patients with candidemia who lack typical candidemia risk factors, especially in those with who are 19-44 years of age and have community-associated candidemia.

Burden of Candidemia in the United States, 2017.

BACKGROUND: Candidemia is a common healthcare-associated bloodstream infection with high morbidity and mortality. There are no current estimates of candidemia burden in the United States (US). METHODS: In 2017, the Centers for Disease Control and Prevention conducted active population-based surveillance for candidemia through the Emerging Infections Program in 45 counties in 9 states encompassing approximately 17 million persons (5% of the national population). Laboratories serving the catchment area population reported all blood cultures with Candida, and a standard case definition was applied to identify cases that occurred in surveillance area residents. Burden of cases and mortality were estimated by extrapolating surveillance area cases to national numbers using 2017 national census data. RESULTS: We identified 1226 candidemia cases across 9 surveillance sites in 2017. Based on this, we estimated that 22 660 (95% confidence interval [CI], 20 210-25 110) cases of candidemia occurred in the US in 2017. Overall estimated incidence was 7.0 cases per 100 000 persons, with highest rates in adults aged ≥ 65 years (20.1/100 000), males (7.9/100 000), and those of black race (12.3/100 000). An estimated 3380 (95% CI, 1318-5442) deaths occurred within 7 days of a positive Candida blood culture, and 5628 (95% CI, 2465-8791) deaths occurred during the hospitalization with candidemia. CONCLUSIONS: Our analysis highlights the substantial burden of candidemia in the US. Because candidemia is only one form of invasive candidiasis, the true burden of invasive infections due to Candida is higher. Ongoing surveillance can support future burden estimates and help assess the impact of prevention interventions.

Real-world evidence of TNF inhibition in axial spondyloarthritis: can we generalise the results from clinical trials?

Management guidelines assume that results from clinical trials can be generalised, although seldom is data available to test this assumption. We aimed to determine the proportion of patients commencing tumour necrosis factor inhibition (TNFi) who would have been eligible for relevant clinical trials, and whether treatment response differs between these groups and the trials themselves. The British Society for Rheumatology Biologics Register for Ankylosing Spondylitis (BSRBR-AS) recruited a real-world cohort of TNFi-naïve spondyloarthritis patients with data collection from clinical records and patient questionnaires. Participant characteristics were extracted from trials identified from a recent Health Technology Assessment of TNFi for ankylosing spondylitis/non-radiographic axial spondyloarthritis. Descriptive statistics were used to determine the differences, including treatment response, between BSRBR-AS participants who would/would not have been eligible for the clinical trials and with trial participants. Among 2420 BSRBR-AS participants, those commencing TNFi (34%) had shorter symptom duration (15 vs 22 years) but more active disease (Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) 6.4 vs 4.0; Bath Ankylosing Spondylitis Disease Functional Index (BASFI) 6.2 vs 3.8). Of those commencing TNFi, 41% met eligibility criteria for ≥1 of fourteen relevant trials; they reported higher disease activity (BASDAI 6.9 vs 6.1) and poorer function (BASFI 6.6 vs 6.0). 61.7% of trial participants reported a positive treatment response, vs 51.3% of BSRBR-AS patients (difference: 10.4%; 95% CI 4.4% to 16.5%). Potential eligibility for trials did not influence treatment response (difference 2.0%; -9.4% to 13.4%). Fewer patients in the real world respond to TNFi than is reported in the trial literature. This has important implications for the generalisability of trial results, and the cost-effectiveness of TNFi agents.

Outcomes and treatment responses, including work productivity, among people with axial spondyloarthritis living in urban and rural areas: a mixed-methods study within a national register.

OBJECTIVE: To examine differences in clinical and patient-reported outcomes, including work, in individuals with axial spondyloarthritis (axSpA) living in rural and urban settings. METHODS: Using a sequential, explanatory mixed-method design, data from the British Society for Rheumatology Biologics Register for Ankylosing Spondylitis were used to (1) characterise participants with axSpA living in rural and urban areas and (b) assess any differences in outcome after commencement of biologic therapy (phase 1). Semistructured interviews (phase 2) further explored the results from phase 1. RESULTS: Patients with axSpA living in rural areas were older and more likely to work in a physical job. Among patients prescribed biologics, there were no differences in response to biologics, but after adjustment for age, sex and local area deprivation rural dwellers reported more presenteeism and overall work impairment. Work effects could be explained by accounting for individual differences in disease activity, fatigue, physical function and job type. Interviews highlighted the complex relationship between clinical factors, contextual factors (work environment, job demands) and work disability. The ability to work and flexibility in terms of what, when and how tasks are undertaken were important. Support from employers was variable and healthcare professionals were often perceived as unsupportive. CONCLUSIONS: Patients with axSpA living in rural areas report a greater impact of their disease on work productivity. New measures are needed to capture important contextual factors and comprehensively determine the impact of long-term conditions on work. Future European League Against Rheumatism axSpA recommendations should include support to work as a target to optimise quality of life in patients with axSpA.

Meningococcal carriage among Georgia and Maryland high school students.

BACKGROUND: Meningococcal disease incidence in the United States is at an all-time low. In a previous study of Georgia high school students, meningococcal carriage prevalence was 7%. The purpose of this study was to measure the impact of a meningococcal conjugate vaccine on serogroup Y meningococcal carriage and to define the dynamics of carriage in high school students. METHODS: This was a prospective cohort study at 8 high schools, 4 each in Maryland and Georgia, during a school year. Students at participating schools received quadrivalent meningococcal conjugate vaccine that uses diphtheria toxoid as the protein carrier (MCV4-DT). In each state, 2 high schools were randomly assigned for MCV4-DT receipt by students at the beginning of the study, and 2 were randomly assigned for MCV4-DT receipt at the end. Oropharyngeal swab cultures for meningococcal carriage were performed 3 times during the school year. RESULTS: Among 3311 students, the prevalence of meningococcal carriage was 3.21%-4.01%. Phenotypically nongroupable strains accounted for 88% of carriage isolates. There were only 5 observed acquisitions of serogroup Y strains during the study; therefore, the impact of MCV4-DT on meningococcal carriage could not be determined. CONCLUSIONS: Meningococcal carriage rates in US high school students were lower than expected, and the vast majority of strains did not express capsule. These findings may help explain the historically low incidence of meningococcal disease in the United States.

Patient preferences for models of care for fibromyalgia: A discrete choice experiment.

BACKGROUND: Fibromyalgia is a common reason for referral to a rheumatologist and is a centralised pain state with symptoms beginning in adolescence/early adulthood and manifests as pain throughout the body, fatigue and cognitive dysfunction. Whilst there is considerable evidence on effective treatments, diagnosis and management are complex. There is almost no evidence on how to organise health services to deliver recommended therapies. The aim of the current study was to understand patient preferences for different features of healthcare services for fibromyalgia. METHODOLOGY: We use the Discrete Choice Experiment Method (DCE), a choice-based survey that quantifies preferences for attributes of goods, services or policy interventions, to elicit preferences in relation to alternative models of care for people with fibromyalgia. In this study, attributes describe different models of care for fibromyalgia. We based attributes and levels on earlier phases of the PACFiND project and a literature review on fibromyalgia models of care. The final analysis sample consisted of 518 respondents who completed the survey in full. RESULTS: The final analysis sample consisted of 518 respondents ((patients living in the UK, over 18 years old, with a diagnosis of fibromyalgia), who completed the survey in full. The model of care most preferred is one characterised by earlier diagnosis and ongoing management by a Rheumatologist, via Face-to-face or Phone/video call appointments, with a stronger preference for the latter mode of support. The most preferred treatment was Medication, followed by Physical Therapy, with the least preferred being Talking Therapy. Relative to a Waiting Time for treatment of 6 months, respondents would prefer a lower Waiting Time of 3 months and dislike waiting 12 months for treatment. Respondents showed willingness to receive Ongoing Help and Advice by a Nurse Practitioner or a GP, instead of a Specialist Rheumatologist, provided they were compensated by other changes in the model of care. CONCLUSION: This study has found that, although respondents express a preference for specialist care, provided by a Rheumatologist, they may be willing to trade-off this preference against other features within a model of care. This willingness to accept a different skill-mix (e.g., appointments with a GP or a Nurse Practitioner) has important implications for practice and policy, as this is a more feasible option in settings where the availability of specialist care is highly constrained.

Do current methods of measuring the impact of chronic pain on work reflect the experience of working-age adults? An integrated mixed-methods systematic narrative review.

ABSTRACT: Chronic pain affects individuals' work participation. The impact of chronic pain on work has historically been measured through sickness absence, though it is now appreciated that the impacts on work are far wider. This mixed-methods review aimed to identify the full range of impacts of pain on work in addition to impacts that are currently measured quantitatively to inform the development of a new questionnaire assessing the wider impacts of chronic pain on work. MEDLINE, Embase, PsychINFO, and CINAHL were searched for studies that included quantitative measures of the impact of chronic pain on work and for qualitative studies where individuals described impacts of their chronic pain on work. Quantitative measures, and text from qualitative studies, were analysed thematically. A thematic framework was developed for establishing the types of impacts measured or described in the literature. Forty-four quantitative and 16 qualitative papers were identified. The literature described impacts within 5 areas: changes at work and to working status; aspects of the workplace and work relationships; pain and related symptoms at work; psychological factors; and factors and impacts outside the work environment related to work. Quantitative measures mainly assessed impacts related to the quantity and quality of work (29 of 42 measures). Seventeen aspects were only discussed within the qualitative literature. This study identifies a discrepancy between the impacts that have been the focus of quantitative measures and the range that individuals working with chronic pain experience and highlights the need for a new measure assessing a wider range of issues.

Identifying key health system components associated with improved outcomes to inform the re-configuration of services for adults with rare autoimmune rheumatic diseases: a mixed-methods study.

BACKGROUND: Adults with rare autoimmune rheumatic diseases face unique challenges and struggles to navigate health-care systems designed to manage common conditions. Evidence to inform an optimal service framework for their care is scarce. Using systemic vasculitis as an exemplar, we aimed to identify and explain the key service components underpinning effective care for rare diseases. METHODS: In this mixed-methods study, data were collected as part of a survey of vasculitis service providers across the UK and Ireland, interviews with patients, and from organisational case studies to identify key service components that enable good care. The association between these components and patient outcomes (eg, serious infections, mortality) and provider outcomes (eg, emergency hospital admissions) were examined in a population-based data linkage study using routine health-care data obtained from patients with antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis from national health datasets in Scotland. We did univariable and multivariable analyses using Bayesian poisson and negative binomial regression to estimate incident rate ratios (IRRs), and Cox proportional hazards models to estimate hazard ratios (HRs). People with lived experiences were involved in the research and writing process. FINDINGS: Good care was characterised by service components that supported timely access to services, integrated care, and expertise. In 1420 patients with ANCA-associated vasculitis identified from national health datasets, service-reported average waiting times for new patients of less than 1 week were associated with fewer serious infections (IRR 0·70 [95% credibility interval 0·55-0·88]) and fewer emergency hospital admissions (0·78 [0·68-0·92]). Nurse-led advice lines were associated with fewer serious infections (0·76 [0·58-0·93]) and fewer emergency hospital admissions (0·85 [0·74-0·96]). Average waiting times for new patients of less than 1 week were also associated with reduced mortality (HR 0·59 [95% credibility interval 0·37-0·93]). Cohorted clinics, nurse-led clinics, and specialist vasculitis multi-disciplinary team meetings were associated with fewer serious infections (IRR 0·75 [0·59-0·96] for cohorted clinics; 0·65 [0·39-0·84] for nurse-led clinics; 0·72 [0·57-0·90] for specialist vasculitis multi-disciplinary team meetings) and emergency hospital admissions (0·81 [0·71-0·91]; 0·75 [0·65-0·94]; 0·86 [0·75-0·96]). Key components were characterised by their ability to overcome professional tensions between specialties. INTERPRETATION: Key service components associated with important health outcomes and underpinning factors were identified to inform initiatives to improve the design, delivery, and effectiveness of health-care models for rare autoimmune rheumatic diseases. FUNDING: Versus Arthritis.

Sex-Specific Outcomes of Acute Stroke in Patients with Systemic Lupus Erythematosus: A National Inpatient Sample Study.

Background: Systemic lupus erythematosus (SLE) is an autoimmune disorder associated with increased stroke risk. Its association with stroke outcomes remains poorly understood. In this study, we aimed to compare the sex-specific SLE-associated acute stroke outcomes. Methods: Stroke hospitalisations between 2015 and 2018 from the National Inpatient Sample were analysed. The associations between SLE and outcomes (inpatient mortality, length-of-stay > 4 days and routine discharge) were examined using multivariable logistic regressions, stratifying by sex and adjusting for age, race, stroke type, revascularisation, hospital characteristics and comorbidities. Results: A total of 316,531 records representing 1,581,430 hospitalisations were included. Median (interquartile range) age was 71 (60−82) years. There were 940 (0.06%) males and 6110 (0.39%) females with SLE. There were no associations between SLE and mortality amongst either females (odds ratio (95% confidence interval) = 1.11 (0.84−1.48)) or males (0.81 (0.34−1.94)). Nevertheless, SLE was associated with prolonged hospitalisation (1.17 (1.03−1.32)) and lower odds of routine discharge (0.82 (0.72−0.94)) amongst females. There were no associations between SLE and other adverse outcomes amongst males. Conclusions: The association between SLE and acute stroke outcomes was influenced by sex. While SLE was not associated with mortality in either sex, females with SLE had higher odds of prolonged hospitalisation and lower odds of routine home discharge compared to patients without SLE, while males did not exhibit this increased risk.

Changes in incidence and antifungal drug resistance in candidemia: results from population-based laboratory surveillance in Atlanta and Baltimore, 2008-2011.

BACKGROUND: Candidemia is common and associated with high morbidity and mortality; changes in population-based incidence rates have not been reported. METHODS: We conducted active, population-based surveillance in metropolitan Atlanta, Georgia, and Baltimore City/County, Maryland (combined population 5.2 million), during 2008-2011. We calculated candidemia incidence and antifungal drug resistance compared with prior surveillance (Atlanta, 1992-1993; Baltimore, 1998-2000). RESULTS: We identified 2675 cases of candidemia with 2329 isolates during 3 years of surveillance. Mean annual crude incidence per 100 000 person-years was 13.3 in Atlanta and 26.2 in Baltimore. Rates were highest among adults aged ≥65 years (Atlanta, 59.1; Baltimore, 72.4) and infants (aged <1 year; Atlanta, 34.3; Baltimore, 46.2). In both locations compared with prior surveillance, adjusted incidence significantly declined for infants of both black and white race (Atlanta: black risk ratio [RR], 0.26 [95% confidence interval {CI}, .17-.38]; white RR: 0.19 [95% CI, .12-.29]; Baltimore: black RR, 0.38 [95% CI, .22-.64]; white RR: 0.51 [95% CI: .29-.90]). Prevalence of fluconazole resistance (7%) was unchanged compared with prior surveillance; 32 (1%) isolates were echinocandin-resistant, and 9 (8 Candida glabrata) were multidrug resistant to both fluconazole and an echinocandin. CONCLUSIONS: We describe marked shifts in candidemia epidemiology over the past 2 decades. Adults aged ≥65 years replaced infants as the highest incidence group; adjusted incidence has declined significantly in infants. Use of antifungal prophylaxis, improvements in infection control, or changes in catheter insertion practices may be contributing to these declines. Further surveillance for antifungal resistance and efforts to determine effective prevention strategies are needed.

Species identification and antifungal susceptibility testing of Candida bloodstream isolates from population-based surveillance studies in two U.S. cities from 2008 to 2011.

Between 2008 and 2011, population-based candidemia surveillance was conducted in Atlanta, GA, and Baltimore, MD. Surveillance had been previously performed in Atlanta in 1992 to 1993 and in Baltimore in 1998 to 2000, making this the first population-based candidemia surveillance conducted over multiple time points in the United States. From 2,675 identified cases of candidemia in the current surveillance, 2,329 Candida isolates were collected. Candida albicans no longer comprised the majority of isolates but remained the most frequently isolated species (38%), followed by Candida glabrata (29%), Candida parapsilosis (17%), and Candida tropicalis (10%). The species distribution has changed over time; in both Atlanta and Baltimore the proportion of C. albicans isolates decreased, and the proportion of C. glabrata isolates increased, while the proportion of C. parapsilosis isolates increased in Baltimore only. There were 98 multispecies episodes, with C. albicans and C. glabrata the most frequently encountered combination. The new species-specific CLSI Candida MIC breakpoints were applied to these data. With the exception of C. glabrata (11.9% resistant), resistance to fluconazole was very low (2.3% of isolates for C. albicans, 6.2% for C. tropicalis, and 4.1% for C. parapsilosis). There was no change in the proportion of fluconazole resistance between surveillance periods. Overall echinocandin resistance was low (1% of isolates) but was higher for C. glabrata isolates, ranging from 2.1% isolates resistant to caspofungin in Baltimore to 3.1% isolates resistant to anidulafungin in Atlanta. Given the increase at both sites and the higher echinocandin resistance, C. glabrata should be closely monitored in future surveillance.

Values and value in patient and public involvement: moving beyond methods.

Patient and public involvement (PPI) in research has evolved over recent years, yet it often remains an 'optional extra' and, in some cases, tokenistic. Discussions are often focused on processes and methods, and are yet to make PPI the norm; we argue that the conversation needs to change to one of 'value': a culture of common values and principles across all types of research. Taking a reflexive, personalised approach, we reflect on how our team's experiences as patients, healthcare professionals and academics have changed over time and shaped what we value, our involvement in research and the way we involve people in research. We illustrate, through our work together, the productive tensions we experience, our efforts to resolve these through analytic conversations and our ethic of responsibility to each other. Moving forward, embracing reflexivity and supporting relationships can help PPI to become integral to research; a value as opposed to a method.

Driving Difficulties in Patients With Axial Spondyloarthritis: Results From the Scotland Registry for Ankylosing Spondylitis.

OBJECTIVE: To describe the driving difficulties experienced by individuals with axial spondyloarthritis (SpA), and to characterize associated clinical and sociodemographic features and impact on work. METHODS: The Scotland Registry for Ankylosing Spondylitis (SIRAS) is a cohort study of patients with a clinical diagnosis of axial SpA. Baseline information was collected on clinical and patient-reported measures and work participation measures (using the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI:SHP]). Patient-rated difficulties with 9 driving tasks were used in a factor analysis, and relationships between driving difficulty and work participation were investigated. RESULTS: In total, 718 patients provided data for analysis, of which 642 (89%) had some difficulty with at least 1 driving task, and 72 (10%) had some difficulty with all 9 tasks. Three domains of driving difficulty were identified: dynamic driving scenarios, crossing traffic, and the physical act of driving. Chronic widespread pain, knee and back pain, fatigue, high disease activity, and anxiety/depression were significantly associated with reporting driving difficulties across all 3 domains, particularly the physical act of driving. After adjusting for sociodemographic, disease activity, physical and mental health, driving difficulties in each domain were associated with a 2-3 times increased likelihood of restricted work productivity and with an increased risk of sickness absence in the past 7 days. CONCLUSION: Driving difficulties are common in individuals with axial SpA and impact on work, even after adjusting for clinical status. Improving understanding and awareness of driving disability will help direct advice and resources to enable individuals to remain independent and economically active.

Comparing the Impact of Symptoms and Health Care Experiences of People Who Have and Have Not Received a Diagnosis of Fibromyalgia: A Cross-Sectional Survey Within the PACFiND Study.

OBJECTIVE: To compare the impact of symptoms and health care utilization of people diagnosed with fibromyalgia, people who fulfill the criteria but are not diagnosed, and people with chronic pain. METHODS: We recruited people who had participated in a previous population survey across Scotland and who reported some typical fibromyalgia symptoms or had received a diagnosis of fibromyalgia. Responses to a postal questionnaire were used to define mutually exclusive groups: people who had a fibromyalgia diagnosis, who met criteria for fibromyalgia, and who had chronic pain. RESULTS: Participants included 85 people with a diagnosis of fibromyalgia, 110 who met criteria for fibromyalgia, and 133 with chronic pain. The mean age across groups ranged 57-59 years, but the percentage female varied markedly: 86%, 64%, and 67%, respectively. Compared to those with chronic pain, participants with a fibromyalgia diagnosis were more likely to be out of employment due to health. An average of 3 years was needed to receive a fibromyalgia diagnosis, and more than half were diagnosed in secondary care (most commonly rheumatology). The fibromyalgia diagnosis and criteria groups were similar in terms of symptom impact, quality of life, and life satisfaction but were worse than the chronic pain group. Participants who had received a diagnosis of fibromyalgia reported the poorest health care experiences. CONCLUSION: An urgent need exists for a model of care for fibromyalgia to ensure prompt diagnosis, access to evidence-based care, and long-term support, with the aim of improving function. The data suggest that diagnosis in men may be overlooked, and this finding warrants further study.

Lessons from experiences of accessing healthcare during the pandemic for remobilizing rheumatology services: a national mixed methods study.

Objectives: To understand the impact of the coronavirus disease 2019 pandemic on access to healthcare services for patients with inflammatory and non-inflammatory musculoskeletal (MSK) conditions. Methods: Three established cohorts that included individuals with axial SpA, psoriatic arthritis and MSK pain completed a questionnaire between July and December 2020. In parallel, a subset of individuals participated in semistructured interviews. Results: A total of 1054 people (45% female, median age 59 years) were included in the quantitative analyses. Qualitative data included 447 free-text questionnaire responses and 23 interviews. A total of 57% of respondents had tried to access care since the start of the UK national lockdown. More than a quarter reported being unable to book any type of healthcare appointment. General practice appointments were less likely to be delayed or cancelled compared with hospital appointments. Younger age, unemployment/health-related retirement, DMARD therapy, anxiety or depression and being extremely clinically vulnerable were associated with a greater likelihood of attempting to access healthcare. People not in work, those reporting anxiety or depression and poorer quality of life were less likely to be satisfied with remotely delivered healthcare. Participants valued clear, timely and transparent care pathways across primary care and specialist services. While remote consultations were convenient for some, in-person appointments enabled physical assessment and facilitated the development and maintenance of clinical relationships with care providers. Conclusions: We identified patient factors that predict access to and satisfaction with care and aspects of care that patients value. This is important to inform remobilisation of rheumatology services to better meet the needs of patients.

Enabling work participation for people with musculoskeletal conditions: lessons from work changes imposed by COVID-19: a mixed-method study.

OBJECTIVES: To understand what we can learn from the impact of the COVID-19 pandemic and lockdown about what enables work participation for people with inflammatory arthritis and chronic pain conditions. DESIGN: Qualitative interviews embedded within an observational questionnaire study of individuals with musculoskeletal (MSK) conditions. SETTING: UK primary care (general practices), and secondary care-based rheumatology services. PARTICIPANTS: Individuals with axial spondyloarthritis, psoriatic arthritis and MSK pain from three established cohorts completed an online/paper-based questionnaire (July-December 2020). A subset of respondents were selected for semistructured interviews. PRIMARY AND SECONDARY OUTCOME MEASURES: The survey quantified the effects of lockdown on work circumstances. Qualitative interviews explored the impacts of these changes and the advantages and disadvantages of changes in work circumstances. RESULTS: 491 people (52% female, median age 49 years) who were employed at the time of lockdown responded to the questionnaire. The qualitative analysis included 157 free-text comments on work from the questionnaire and data collected within 18 interviews.Participants reported impacts on mental and physical health, and significant financial anxieties. The impact of work changes varied depending on individual and home circumstances. Some felt forced to ignore advice to shield and continue working. The flexibility offered by home working and changes in commuting enabled greater physical activity for some, while others missed the exercise normally undertaken as part of their commute. Others reported a constant need to be 'present' online, which heightened anxiety and worsened MSK symptoms. CONCLUSION: Lockdown showed that flexible working arrangements, which consider the positive and negative aspects of commuting, posture, movement, and work environment matter for work participation, and can have wider benefits in terms of health and well-being for those with long-term MSK conditions. Incorporating these into new models of work will help make the workplace more equitable and inclusive for people with long-term MSK conditions.