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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.
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COVID-19 , Dor Crônica/psicologia , Controle de Doenças Transmissíveis , Doenças Musculoesqueléticas/psicologia , Qualidade de Vida , Adulto , Idoso , Ansiedade/epidemiologia , Ansiedade/etiologia , Feminino , Seguimentos , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Sistema de Registros , SARS-CoV-2 , Reino Unido/epidemiologiaRESUMO
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.
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Antirreumáticos/uso terapêutico , Eficiência/efeitos dos fármacos , Espondilartrite/complicações , Espondilartrite/tratamento farmacológico , Absenteísmo , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Presenteísmo/estatística & dados numéricos , Sistema de Registros , População Rural , Resultado do Tratamento , Reino Unido , População UrbanaRESUMO
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.
Walk With Ease (WWE) is a popular walking programme in the USA. It was specially designed for people living with arthritis and musculoskeletal conditions. Over 6-weeks, participants follow a guidebook and can choose to walk by themselves or with an instructor-led group. Research evidence has shown that WWE increases time spent being physically active and improves arthritis symptoms. We wanted to bring WWE across the pond to explore whether it would be well-received and possible to conduct in the UK. We worked with community and patient partners to make sure the WWE materials made sense for a British audience and trained walk leaders. We recruited participants and asked them to complete physical assessment tests, questionnaires, and interviews both before and after the 6-week walking programme. There were 149 participants who took partmost were older womenand 97 participants received the WWE programme. Almost all (99%) would recommend WWE to family and friends. They said, in the interviews, that the programme improved their motivation to be physically active, helped their mood, and social well-being. Their physical performance and arthritis symptoms also improved. WWE has great potential to improve health and well-being of people with arthritis in the UK.
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Artrite , Adulto , Humanos , Masculino , Feminino , Estudos de Viabilidade , Artrite/terapia , Caminhada , Autorrelato , Reino UnidoRESUMO
Objective: Suboptimal sleep and physical activity are common among people living with osteoarthritis (OA) and simultaneous improvements in both may have a beneficial impact on pain. This study aimed to gather perspectives of people living with OA on important aspects to incorporate in a hybrid sleep and physical activity improvement intervention for OA pain management. Design: Qualitative study using two rounds of two focus groups. Setting and participants: Focus groups were conducted with adults living with OA-related chronic pain and sleep disturbances. Eighteen people attended focus groups in January 2020 and, of these, 16 attended subsequent focus groups in February 2020. Methods: Discussion at the first round of focus groups informed generation of prototype intervention materials that were shared, discussed and refined at the second round of focus groups. Thematic analysis was used to identify themes and sub-themes from the data. Results: Three themes, each with three sub-themes, were identified: facilitators of engagement with the intervention (sub-themes: motivational language, accountability and education); barriers to engagement (sub-themes: suboptimal interaction with healthcare practitioners, recording behaviour as burdensome/disruptive and uncertainty about technique) and characteristics of a physical activity intervention component (sub-themes: tailored, sustainable and supported). Conclusion: We have identified important aspects to incorporate into the design and delivery of a hybrid sleep and physical activity improvement intervention for OA pain management. Insights will be incorporated into intervention materials and protocols, with feasibility and acceptability assessed in a future study.
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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.
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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.