Objective To quantify the change in quality of life, disease-specific indicators, health, and lifestyle before and during the COVID19 pandemic amongst 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 1054 people took part in the study (596 axSpA, 162 PsA, 296 regional pain). In comparison to 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 focussing 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.
ObjectiveTo examine differences in clinical and patient-reported outcomes, including work, in individuals with axial spondyloarthritis (axSpA) living in rural and urban settings.MethodsUsing 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.ResultsPatients 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.ConclusionsPatients 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.
ObjectivesTo 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.DesignQualitative interviews embedded within an observational questionnaire study of individuals with musculoskeletal (MSK) conditions.SettingUK primary care (general practices), and secondary care-based rheumatology services.ParticipantsIndividuals 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 measuresThe 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.Results491 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.ConclusionLockdown 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.
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A data observatory for a local government authority in Scotland was developed in collaboration with university researchers and other stakeholders. The data observatory provided a platform to extract, analyse and view data from various databases. The data observatory was created using standard web tools. One component of the observatory, the DataHub, is provided as a case study. It was developed in partnership with other agencies and produced new information on school leaver destinations. After two years the project paid for itself in terms of staff time saved. Lessons learned about setting up a city-wide data observatory are provided.
Developed in the United States (US), Walk With Ease (WWE) is a popular evidence-based, 6-week community walking programme for adults with arthritis, delivered in either an instructor-led or self-directed format. While WWE has expanded into communities across the USA, it is relatively unknown in other countries across the globe. This study, in collaboration with community and patient partners, aimed to examine the relevance, acceptability and feasibility of introducing WWE into a UK context. After initial cultural adaptation, participants were recruited into the study. Eligible (≥18 years, doctor diagnosed arthritis (confirmed or self-report), self-reported joint symptoms in last 30 days, BMI ≥25 kg/m2, and <150 min/week of moderate/vigorous PA) and consented participants were randomized into two groups: WWE programme or usual care. A mixed-methods analysis approach integrated quantitative data (physical performance assessment; baseline and post-six week programme questionnaire) and qualitative data (narrative interviews exploring participants’ pre- and post-WWE experiences and stakeholders’ perceptions). Of 149 participants, the majority were women (70%) aged ≥60 years (76%). Among the 97 receiving the programme, 52 chose instructor-led; 45 chose self-directed. Participants found WWE relevant and acceptable—99% indicating they would recommend WWE to family/friends. Within both WWE formats, mixed differences representing improvement were observed at 6 weeks from baseline for physical performance and arthritis symptoms. Emergent themes included improved motivation, health, and social well-being. WWE is a relevant and acceptable walking programme with scope for wider implementation to support UK health and well-being policy strategies.
The Scottish Executive has published a collection of desired policy destinations with designated indicators of progress which set out its ambitions for social justice. Milestone 9, in Social Justice: a Scotland where everyone matters, aspires to bring the attainment of the poorest-performing 20% closer to the attainment of all pupils in compulsory education. In the context of Scotland’s National Priorities in education, this paper focuses on the lowest attaining 20% of pupils in Scotland’s compulsory education sector. The historical and political context of the National Priorities is discussed in conjunction with the challenges of Milestone 9. The main sections of this paper draw on empirical data: to describe more fully Scotland’s young people who fall within the bottom quintile and to widen its conceptual frame to include social, economic and spatial constituents; and, through a small interview study, to illuminate how the high-level policy intention of Milestone 9 is mediated into practice. The final section of the paper addresses the implications of norm-referenced and criterion-referenced ways of constructing the poorest performing quintile and places these in the context of contemporary research into absolute and relative social mobility in Scotland.
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