Generating EQ-5D-5L health utility scores from BASDAI and BASFAI : A mapping study in patients with axial spondyloarthritis using longitudinal UK registry data

Acknowledgments: We are grateful to the staff of the British Society for Rheumatology Biologics Register in Axial Spondyloarthritis. Claudia Zabke, Maureen Heddle, Nafeesa Nazlee and Barry Morris, and to the recruiting staff at the clinical centres, details of which are available at: https://www.abdn.ac.uk/iahs/research/epidemiology/spondyloarthritis.php#panel1011 Funding/Support: The British Society for Rheumatology Biologics Register in Ankylosing. Spondylitis (BSRBR-AS) is funded by the British Society for Rheumatology (BSR), which in turn has received funding from the manufacturers of the biologic therapies included in the study (Abbvie, Pfizer and UCB). Pharmaceutical companies providing funds to BSR do not have a role in the oversight of the study, but they do receive advance notice of publications on which they can comment. They do not have access to the data collected but can request analyses of the data, for which additional funds are provided.Peer reviewedPostprin

Generating EQ-5D-5L health utility scores from BASDAI and BASFI : a mapping study in patients with axial spondyloarthritis using longitudinal UK registry data

Acknowledgements We are grateful to the staff of the British Society for Rheumatology Biologics Register in Axial Spondyloarthritis. Claudia Zabke, Maureen Heddle, Nafeesa Nazlee and Barry Morris, and to the recruiting staff at the clinical centres, details of which are available at: https://www.abdn.ac.uk/iahs/research/epidemiology/spondyloarthritis.php#panel1011. Funding The British Society for Rheumatology Biologics Register in Ankylosing. Spondylitis (BSRBR-AS) is funded by the British Society for Rheumatology (BSR), which in turn has received funding from the manufacturers of the biologic therapies included in the study (Abbvie, Pfizer and UCB). Pharmaceutical companies providing funds to BSR do not have a role in the oversight of the study, but they do receive advance notice of publications on which they can comment. They do not have access to the data collected but can request analyses of the data, for which additional funds are provided.Peer reviewedPublisher PD

Generating EQ-5D-5L health utility scores from BASDAI and BASFI:a mapping study in patients with axial spondyloarthritis using longitudinal UK registry data

BACKGROUND: Preference-based health-state utility values (HSUVs), such as the EuroQol five-dimensional questionnaire (EQ-5D-5L), are needed to calculate quality-adjusted life-years (QALYs) for cost-effectiveness analyses. However, these are rarely used in clinical trials of interventions in axial spondyloarthritis (axSpA). In these cases, mapping can be used to predict HSUVs. OBJECTIVE: To develop mapping algorithms to estimate EQ-5D-5L HSUVs from the Bath Ankylosing Disease Activity Index (BASDAI) and the Bath Ankylosing Spondylitis Functional Index (BASFI). METHODS: Data from the British Society for Rheumatology Biologics Register in Ankylosing Spondylitis (BSRBR-AS) provided 5122 observations with complete BASDAI, BASFI, and EQ-5D-5L responses covering the full range of disease severity. We compared direct mapping using adjusted limited dependent variable mixture models (ALDVMMs) and optional inclusion of the gap between full health and the next feasible value with indirect response mapping using ordered probit (OPROBIT) and generalised ordered probit (GOPROBIT) models. Explanatory variables included BASDAI, BASFI, and age. Metrics to assess model goodness-of-fit and performance/accuracy included Akaike and Bayesian information criteria (AIC/BIC), mean absolute error (MAE) and root mean square error (RMSE), plotting predictive vs. observed estimates across the range of BASDAI/BASFI and comparing simulated data with the original data set for the preferred/best model. RESULTS: Overall, the ALDVMM models that did not formally include the gap between full health and the next feasible value outperformed those that did. The four-component mixture models (with squared terms included) performed better than the three-component models. Response mapping using GOPROBIT (no squared terms included) or OPROBIT (with squared terms included) offered the next best performing models after the three-component ALDVMM (with squared terms). Simulated data of the preferred model (ALDVMM with four-components) did not significantly underestimate uncertainty across most of the range of EQ-5D-5L values, however the proportion of data at full health was underrepresented, likely due in part to model fitting on a small number of observations at this point in the actual data (4%). CONCLUSIONS: The mapping algorithms developed in this study enabled the generation of EQ-5D-5L utilities from BASDAI/BASFI. The indirect mapping equations reported for the EQ-5D-5L facilitate the calculation of the EQ-5D-5L utility scores using other UK and country-specific value sets. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10198-022-01429-x

A promising Start? The Local Network Fund for Children and Young People: Interim Findings from the National Evaluation

This is a summary of the interim evaluation report of the National Evaluation of the Local Network Fund (LNF) for Children and Young People. It is based on data gathered during the first phase of the evaluation (between October 2002 to December 2003). A final report of the National Evaluation will be available early in 2005. A consortium of research organisations, led by the University of Hull and including BMRB Social Research, The University of York and the University of Sheffield were commissioned in August 2002 by the-then Children and Young People’s Unit (CYPU) to carry out the evaluation

Bringing the walk with ease programme to the UK: a mixed-methods study to assess the relevance, acceptability, and feasibility of implementation for people with arthritis and musculoskeletal conditions.

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 British Society for Rheumatology Biologics Registers in Ankylosing Spondylitis (BSRBR-AS) study : Protocol for a prospective cohort study of the long-term safety and quality of life outcomes of biologic treatment

Acknowledgements Oversight of the study is provided by the BSR Registers Committee of which GJM and GTJ are members, together with investigators from BSRBR-RA, representatives from the BSR clinical affairs section and BSR independent members, currently, Alex MacGregor (University of East Anglia), Elaine Dennison (University of Southampton), Jon Packham (Keele University) and patient representatives Ailsa Bosworth and Debbie Cook. We acknowledge the contribution of the International Advisory Group members Desireé van der Heijde (Netherlands), Matthew Brown (Australia) and Walter Maksymowych (Canada). We thank Neil Basu (University of Aberdeen) for his role with regards to pharmacovigilance and the Robertson Centre for Biostatistics (University of Glasgow) for data management services. Author KTM is currently at the Tayside Clinical Trials Unit, University of Dundee. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Peer reviewedPublisher PD

Maintained physical activity and physiotherapy in the management of distal arm pain: A randomised controlled trial

Objectives: The epidemiology of distal arm pain and back pain are similar. However, management differs considerably: for back pain, rest is discouraged, whereas patients with distal arm pain are commonly advised to rest and referred to physiotherapy. We hypothesised that remaining active would reduce long-term disability and that fast-track physiotherapy would be superior to physiotherapy after time on a waiting list.Methods: Adults referred to community-based physiotherapy with distal arm pain were randomised to: advice to remain active while awaiting physiotherapy (typically delivered after 6-8 weeks); advice to rest while awaiting physiotherapy, or immediate treatment. Intention-to-treat analysis determined whether the probability of recovery at 26 weeks was greater among the active advice group, compared with those advised to rest and/or among those receiving immediate versus usually timed physiotherapy.Results: 538 of 1663 patients invited between February 2012 and February 2014 were randomised (active=178; rest=182; immediate physiotherapy=178). 81% provided primary outcome data, and complete recovery was reported by 60 (44%), 46 (32%) and 53 (35%). Those advised to rest experienced a lower probability of recovery (OR: 0.54; 95% CI 0.32 to 0.90) versus advice to remain active. However, there was no benefit of immediate physiotherapy (0.64; 95% CI 0.39 to 1.07).Conclusions: Among patients awaiting physiotherapy for distal arm pain, advice to remain active results in better 26-week functional outcome, compared with advice to rest. Also, immediate physiotherapy confers no additional benefit in terms of disability, compared with physiotherapy delivered after 6-8 weeks waiting time. These findings question current guidance for the management of distal arm pain

Arm Pain Trial : Study materials

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Maintaining musculoskeletal health using a behavioural therapy approach : a population-based randomised controlled trial (the MAmMOTH Study)

Acknowledgements: The study was funded by Arthritis Research UK (now Versus Arthritis) grant number: 20748. Costs for delivery of the intervention were provided by NHS Grampian, NHS Greater Glasgow and Clyde, and NHS Highland. The funder of the study had no role in the study design, data collection, data analysis, data interpretation, or writing of the report. We acknowledge the contribution of the trial steering committee to the successful conduct of the study. The members were Professor Ernest Choy (Cardiff University), Professor Tamar Pincus (Royal Holloway, University of London) and Gordon Taylor (Bath University). We thank Brian Taylor and Mark Forrest from the Centre for Healthcare Randomised Trials (CHaRT) at the University of Aberdeen for their technical assistance and Professor Graeme MacLennan, Director of CHaRT, for methodological input. Professor John Norrie (originally University of Aberdeen now University of Edinburgh) and Dr. Majid Artus (originally Keele University, now the Osmaston surgery, Derbyshire) were study investigators at the time of grant award but subsequently left the study. We thank Kathy Longley (a representative of Fibromyalgia Action UK) for her input to the grant application and the project as well as from members of the public on the University of Aberdeen College of Life Sciences and Medicine Research Interest Group. The prioritisation of “Prevention of chronic pain” arose from a 2012 meeting of the Arthritis Research UK Clinical Study Group in Pain to which patients contributed.Peer reviewedPostprintsupplementary_datasupplementary_dat

Maintained physical activity and physiotherapy in the management of distal upper limb pain – a protocol for a randomised controlled trial (the arm pain trial)

&lt;b&gt;Background&lt;/b&gt;&lt;p&gt;&lt;/p&gt; Distal upper limb pain (pain affecting the elbow, forearm, wrist, or hand) can be non-specific, or can arise from specific musculoskeletal disorders. It is clinically important and costly, the best approach to clinical management is unclear. Physiotherapy is the standard treatment and, while awaiting treatment, advice is often given to rest and avoid strenuous activities, but there is no evidence base to support these strategies. This paper describes the protocol of a randomised controlled trial to determine, among patients awaiting physiotherapy for distal arm pain, (a) whether advice to remain active and maintain usual activities results in a long-term reduction in arm pain and disability, compared with advice to rest; and (b) whether immediate physiotherapy results in a long-term reduction in arm pain and disability, compared with physiotherapy delivered after a seven week waiting list period.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Methods/Design&lt;/b&gt;&lt;p&gt;&lt;/p&gt; Between January 2012 and January 2014, new referrals to 14 out-patient physiotherapy departments were screened for potential eligibility. Eligible and consenting patients were randomly allocated to one of the following three groups in equal numbers: 1) advice to remain active, 2) advice to rest, 3) immediate physiotherapy. Patients were and followed up at 6, 13, and 26 weeks post-randomisation by self-complete postal questionnaire and, at six weeks, patients who had not received physiotherapy were offered it at this time. The primary outcome is the proportion of patients free of disability at 26 weeks, as determined by the modified DASH (Disabilities of the Arm, Shoulder and Hand) questionnaire.&lt;p&gt;&lt;/p&gt; We hypothesise (a) that advice to maintain usual activities while awaiting physiotherapy will be superior than advice to rest the arm; and (b) that fast-track physiotherapy will be superior to normal (waiting list) physiotherapy. These hypotheses will be examined using an intention-to-treat analysis.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Discussion&lt;/b&gt;&lt;p&gt;&lt;/p&gt; Results from this trial will contribute to the evidence base underpinning the clinical management of patients with distal upper limb pain, and in particular, will provide guidance on whether they should be advised to rest the arm or remain active within the limits imposed by their symptoms