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"Dures, Emma"
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Fatigue in inflammatory rheumatic diseases: current knowledge and areas for future research
by
Dures Emma
,
Wan-Fai, Ng
,
Davies, Kristen
in
Arthritis
,
Autonomic nervous system
,
Clinical trials
2021
Fatigue is a complex phenomenon and an important health concern for many people with chronic inflammatory rheumatic diseases, such as rheumatoid arthritis, psoriatic arthritis, primary Sjögren syndrome and systemic lupus erythematosus. Although some clinical trials have shown the benefits of cognitive behavioural therapy in fatigue management, the effect of this approach is relatively modest, and no curative treatment has been identified. The pathogenesis of fatigue remains unclear. Despite many challenges and limitations, a growing body of research points to roles for the immune system, the central and autonomic nervous systems and the neuroendocrine system in the induction and maintenance of fatigue in chronic diseases. New insights indicate that sleep, genetic susceptibility, metabolic disturbances and other biological and physiological mechanisms contribute to fatigue. Furthermore, understanding of the relationships between psychosocial factors and fatigue is increasing. However, the interrelationships between these diverse mechanisms and fatigue remain poorly defined. In this Review, we outline various biological, physiological and psychosocial determinants of fatigue in inflammatory rheumatic diseases, and propose mechanistic and conceptual models of fatigue to summarize current understanding, stimulate debate and develop further research ideas.Fatigue is a common and debilitating symptom of inflammatory rheumatic diseases, but the underlying mechanisms remain poorly understood. In this Review, the authors examine the potential contributing factors, present putative models of fatigue and discuss challenges for research and treatment.
Journal Article
Upper-limb rehabilitation interventions delivered by healthcare professionals for adult patients in the intensive care unit setting: protocol for a scoping review
2025
IntroductionPost-intensive care syndrome affects up to 70% of adult intensive care unit (ICU) survivors, with ICU-acquired weakness contributing substantially to long-term disability. Despite evidence supporting early and structured rehabilitation to enhance physical recovery, targeted upper-limb rehabilitation approaches in the ICU remain comparatively underexplored. This scoping review will map and summarise existing evidence on upper-limb weakness and rehabilitation strategies delivered by healthcare professionals for critically ill adults.Methods and analysisThis scoping review protocol has been developed in accordance with the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, ensuring transparent and comprehensive reporting. Searches will be conducted in MEDLINE (Ovid), CINAHL (EBSCO), Embase, Scopus and the Cochrane Central Register of Controlled Trials (CENTRAL). The search will include studies published between March 2009 and August 2025, aligning with National Institute of Clinical Excellence (NICE) Guideline CG83 (2009), which marked a major policy shift in ICU rehabilitation practice. Quantitative data will be summarised descriptively (eg, frequencies and proportions), while qualitative data will undergo thematic synthesis to identify patterns in experiences, perceptions and implementation of upper-limb rehabilitation. Grey literature (eg, OpenGrey and relevant conference proceedings) will also be screened to reduce publication bias. Rayyan AI software will be used to manage citation screening and reviewer collaboration; no artificial intelligence-assisted decision tools will be used to determine study inclusion.Ethics and disseminationAs this review will synthesise previously published data, ethical approval is not required. Results will be disseminated through peer-reviewed publication, conference presentations and open-access platforms. Findings from this review will inform the development of evidence-based ICU rehabilitation guidelines and highlight priorities for future research to improve upper-limb recovery in critically ill adults.Study registrationOpen Science Framework (osf.io/j86nf).
Journal Article
The self-management support needs of people diagnosed with psoriatic arthritis: a realist review protocol
by
Ovens, Jason
,
Tillett, William
,
Fishpool, Katie
in
Arthritis, Psoriatic - psychology
,
Arthritis, Psoriatic - therapy
,
Clinical outcomes
2026
IntroductionPsoriatic arthritis (PsA) is a form of inflammatory arthritis linked to psoriasis. Previous research from the UK has found that many people feel unsupported when diagnosed with PsA and lack confidence in managing their condition. This realist review aims to understand what works and does not work for whom and in what circumstances, in relation to healthcare professionals engaging with people to support them in developing self-management skills.Methods and analysisThis protocol was developed by defining the scope of the review, using a brief directed literature review to support discussion by an expert group of researchers, healthcare professionals and a patient partner. A theoretical domains framework was generated, consisting of nine initial programme theories. These were further refined with input from Patient and Public Involvement and Engagement groups and used to develop a database search strategy.A systematic search of MEDLINE, CINAHL, Embase, Emcare and APA PsycINFO will be carried out, supplemented by citation tracking, exploration of grey literature and a mixed methods survey of rheumatology health professionals. Data selection will be performed by a minimum of two reviewers and data from included sources will be extracted using a template. Data will be synthesised narratively with respect to the identified initial programme theories, using these data to refine or refute these theories. This will generate refined programme theories to explain what works for whom and in what circumstances.Ethics and disseminationEthical approval for the health professionals survey was granted through the Research Ethics Committee, University of the West of England (Project ID: 10991848). Outputs will be disseminated to the research community through conference presentations and a peer-reviewed journal article. The strategy for sharing outputs with patients and health professionals will be discussed and agreed with knowledge user groups.
Journal Article
Non-pharmacological fatigue interventions for patients with a primary brain tumour: a scoping review protocol
by
Dures, Emma
,
Simms-Moore, Rachael
,
Barua, Neil
in
Brain cancer
,
Brain Neoplasms - complications
,
Brain Neoplasms - therapy
2023
IntroductionFatigue is the most prevalent symptom for patients with a primary brain tumour (PBT), significantly reducing quality of life and limiting daily activities. Currently, there are limited options for managing cancer-related fatigue (CRF) in patients with a PBT, using non-pharmacological methods. The objective of this scoping review is to identify current and emerging evidence in relation to non-pharmacological CRF interventions for patients with a PBT.Methods and analysisElectronic databases OVID and EBSCO platforms: MEDLINE, EMBASE and CINAHL will be searched. In addition, PROSPERO, The Cochrane Library and ISI Web of Science will be searched. Trials registries CENTRAL and the International Clinical Trials Registry platform will also be searched for ongoing research. Inclusion criteria: studies from 2006 onwards, primary research on non-pharmacological interventions in patients with a PBT (>18 years). A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram will be utilised to summarise the screening process and results.Quantitative data will be analysed descriptively, while content analysis will be used for qualitative data.Findings will map the existing and emerging evidence on non-pharmacological interventions for CRF in patients with PBTs. This will provide insights into the extent and nature of the evidence in this evolving field, identifying gaps in knowledge and research priorities, and guide further investigations in this area.Ethics and disseminationEthical approval is not required for this scoping review. Findings will be disseminated via relevant peer-reviewed journals, PhD thesis, conference presentations, and shared with relevant charities and health professionals.
Journal Article
Instruments for measuring fatigue in people with rheumatic and musculoskeletal diseases: a systematic review of measurement properties
by
Santos, Eduardo José Ferreira
,
Erhieyovwe, Emmanuel Oghenetejiri
,
Pearson, Jen
in
Adolescent
,
Arthritis
,
Autoimmune Diseases
2025
ObjectiveTo summarise the measurement properties of instruments used to assess fatigue in people with rheumatic and musculoskeletal diseases (RMDs).MethodsA systematic review (SR) of measurement properties was conducted in children, adolescents/young adults and adults with RMDs, following Joanna Briggs Institute and COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) guidelines. Searches were performed in Medline, Embase, CINAHL and Cochrane Library. Risk of bias assessment, data extraction and synthesis were conducted independently by two reviewers. Instruments were assessed according to Outcome Measures in Rheumatology (OMERACT) criteria.ResultsOut of 16 657 records, 109 articles underwent full-text review, and 60 met inclusion criteria. These studies evaluated the psychometric properties of 27 instruments. Most studies focused on construct validity (54/60, 90%) and intermethod reliability (45/60, 75%), with an overall low risk of bias. In contrast, test–retest reliability (13/60, 21.7%) and responsiveness (14/60, 23.3%) were less frequently assessed, but also with an overall low risk of bias. Evidence regarding clinical trial discrimination and thresholds of meaningful change was limited or absent, indicating the need for further research in these domains. Only five instruments—the Functional Assessment of Chronic Illness Therapy (FACIT) Fatigue, the 36-Item Short Form Survey Instrument (SF-36) Vitality, the Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire (BRAF-MDQ), the BRAF Numerical Rating Scales (BRAF-NRS) and the Fatigue Severity Scale (FSS)—were rated as valid, reliable and low risk of bias, fulfilling OMERACT endorsement criteria.ConclusionsThis SR comprehensively supports the use of several well-validated instruments to assess fatigue, particularly FACIT-Fatigue, SF-36 Vitality, BRAF-MDQ, BRAF-NRS and FSS, in both clinical and research settings.PROSPERO registration numberCRD42024507112.
Journal Article
Pain management training for people with persistent pain and their informal carers (JOINT SUPPORT): multicentre randomised controlled feasibility trial with embedded qualitative study in English musculoskeletal services
2025
ObjectivesTo assess the feasibility of conducting a pragmatic, multicentre randomised controlled trial (RCT) to test the clinical and cost-effectiveness of a pain management training intervention to support people with persistent musculoskeletal pain and their informal carers.DesignTwo-arm, multicentre, pragmatic, open, feasibility RCT with embedded qualitative study.SettingNational Health Service (NHS) providers in four English hospitals.ParticipantsAdults receiving NHS care for persistent musculoskeletal pain and their informal carers.InterventionControl: usual NHS care. Experimental: usual NHS care plus a carer-patient pain management training intervention (JOINT SUPPORT), comprising five, 1-hour, group-based sessions for patients and carers, delivered by trained physiotherapists or occupational therapists. Content included understanding pain, pacing, graded activity, fear avoidance, goal-setting, understanding the benefits of physical activity and medication management. This was re-enforced with a workbook. After the group-based sessions, patients and carers were supported through three telephone sessions.RandomisationCentral randomisation was computer-generated (2:1 Experimental:Control), stratified by hospital and patient-participant age (≤65 years). There was no blinding.Main outcome measuresData collected at baseline and 3 months post-randomisation included screening logs, intervention logs, fidelity checklists and clinical outcomes on quality of life, physical and emotional outcomes, adverse events and resource use. Interviews with 14 patient-carer participants and six health professionals who delivered the intervention.ResultsA total of 76 participants (38 patients; 38 carers) were enrolled. Sixty per cent (312/480) of patients screened were eligible with 12% consenting to be randomised (38/312). Fifty-four per cent (13/24) of the experimental group reached minimal compliance with the JOINT SUPPORT intervention. There was no evidence of treatment contamination. For patient-participant outcomes, within-group differences from baseline to 3 months favoured the control group when assessed by EQ-5D and Generalised Self-Efficacy total score, but favoured the intervention group when assessed by numerical rating scale pain, fatigue and Centre for Epidemiologic Studies Depression Scaletotal score. Qualitative data demonstrated the acceptability of the trial design and JOINT SUPPORT intervention with modifications to improve trial processes.ConclusionsThe JOINT SUPPORT intervention was acceptable to patient-carer dyads and health professionals. Modifications to trial design, particularly enhanced recruitment strategies, are required.Trial registration numberISRCTN78169443.Data availability statementThe data that support the findings of this study are available from the corresponding author (TS) on reasonable request. This includes access to the full protocol, anonymised participant-level dataset and statistical code.
Journal Article
Informal caregiver training for people with chronic pain in musculoskeletal services (JOINT SUPPORT): protocol for a feasibility randomised controlled trial
2023
IntroductionChronic musculoskeletal (bone, joint or muscle) pain is disabling. People with it frequently have difficulties in managing everyday activities. Individuals may rely on family members or friends to support them. These people are known as informal caregivers. No interventions have previously addressed the health needs of people with chronic musculoskeletal pain and their caregivers. In response, the JOINT SUPPORT programme was developed. In this study, we will assess the feasibility and acceptability of conducting a pragmatic, multicentre, randomised controlled trial (RCT) to test the clinical and cost-effectiveness of the JOINT SUPPORT programme to support these individuals.Methods and analysisThis will be a mixed-methods feasibility RCT. We will recruit 80 patients with chronic musculoskeletal pain with their informal caregivers. Patients will be randomised to usual National Health Service (NHS) care OR usual NHS care plus a caregiver–patient dyad training programme (JOINT SUPPORT). This programme comprises of five, 1-hour, group-based sessions for patients and caregivers, delivered by trained physiotherapists or occupational therapists. It includes developing skills in: understanding pain, pacing, graded activity, fear avoidance and goal-setting, understanding benefits of physical activity and skills in medication management. This will be re-enforced with a workbook. After the group-based sessions, patients and caregivers will be supported through three telephone sessions with a therapist. Data collected at baseline and 3 months will include: screening logs, intervention logs, fidelity checklists and clinical outcomes on quality of life, physical and emotional outcomes, adverse events and resource use. Qualitative research with 24 patient–caregiver dyads and 12 healthcare professionals will explore the acceptability of trial processes. Stop–go criteria will inform the progression to a full trial.Ethics and disseminationEthical approval was obtained on 22 February 2022 (National Research Ethics Committee Number: 22/NW/0015). Results will be reported at conferences, peer-review publications and across social media channels.Trial registration numberISRCTN78169443.
Journal Article
Factors influencing the outcomes of non-pharmacological interventions for managing fatigue across the lifespan of people living with musculoskeletal (MSK) conditions: a scoping review protocol
by
Erhieyovwe, Emmanuel Oghenetejiri
,
Pearson, Jen
,
Ciurtin, Coziana
in
Arthritis
,
Chronic Disease
,
Connective tissue
2024
IntroductionFatigue is an important and distressing symptom for many people living with chronic musculoskeletal (MSK) conditions. Many non-pharmacological interventions have been investigated in recent years and some have been demonstrated to be effective in reducing fatigue and fatigue impact, however, there is limited guidance for clinicians to follow regarding the most appropriate management options. The objective of this scoping review is to understand and map the extent of evidence in relation to the factors that relate to the outcome of non-pharmacological interventions on MSK condition-related fatigue across the lifespan.Methods and analysisThis scoping review will include evidence relating to people of all ages living with chronic MSK conditions who have been offered a non-pharmacological intervention with either the intention or effect of reducing fatigue and its impact. Databases including AMED, PsycINFO, CINAHLPlus, MEDLINE, EMBASE and Scopus will be searched for peer-reviewed primary research studies published after 1 January 2007 in English language. These findings will be used to identify factors associated with successful interventions and to map gaps in knowledge.Ethics and disseminationEthical approval was not required for this review. Findings will be disseminated by journal publications, conference presentations and by communicating with relevant healthcare and charity organisations.
Journal Article
Qualitative interview study of rheumatology patients’ experiences of COVID-19 shielding to explore the physical and psychological impact and identify associated support needs
2024
ObjectiveMany clinically extremely vulnerable rheumatology patients have only recently ceased shielding from COVID-19, while some continue to minimise in-person contact. The objective of this study was to understand the impact of shielding and associated support needs in patients with rheumatic conditions and to understand how rheumatology teams can meet these needs both currently and in future pandemics.Design, participants and settingThe study was conducted in the Southwest of England using a case-study design. The participants were 15 patients with rheumatic conditions who were advised to shield and/or chose to shield at any time during the COVID-19 pandemic.MethodsQualitative data collected via telephone and online semi-structured interviews and analysed using reflexive thematic analysis.ResultsFifteen interviews were conducted. Three main themes represent the data:‘Just shove them over there in the corner’ captures changes in patients’ self-perception. They felt different to most other people, vulnerable and left behind. The initial sense of shock was followed by a sense of loss as changes became long term.‘A long and lonely road’ captures patients’ psychological isolation due to a perceived lack of understanding and support. This included having to prove their health status and justify their shielding behaviours, which impacted their relationships. At times, they felt abandoned by their healthcare providers.‘You can’t just flip a switch’ captures the difficulty of getting back to pre-pandemic normal after shielding. Patients did not recognise themselves physically and mentally. They wanted to collaborate with health professionals and identified the need for specific guidance to support their recovery.ConclusionPatients are dealing with lasting physical and mental effects from shielding and consequences of delayed healthcare. Health professionals need time and resources to ask about patients’ well-being, identify their health needs and refer/signpost to appropriate sources of support.
Journal Article
Patients’ perspectives of telemedicine appointments for psoriatic arthritis during the COVID-19 pandemic: results of a patient-driven pilot survey
by
Gullick, Nicola J.
,
Parkinson, Andrew
,
Dures, Emma
in
Medicine
,
Medicine & Public Health
,
Patient perspectives
2022
Background
Over recent years the lack of patient involvement in the design, set-up and implementation of clinical research studies has been well recognised; as such there has been a drive within research communities to increase patient participation. Patient perspectives on telemedicine differ widely, with variation in whether patients feel remote consultations are beneficial. By means of a patient-driven survey, we aimed to formally evaluate patient perspectives on its benefits and pitfalls, focusing on patients with psoriatic arthritis (PsA).
Methods
An e-survey was developed by two patient representatives on the BritPACT steering committee, with a view to determining unmet needs and the perceived impact on clinical care of virtual consultations amongst patients with PsA.
Results
128 patients responded to the e-survey. 109 patients rated the effectiveness of their telemedicine appointment and, of these, 18% felt their virtual consultation was very/extremely effective compared to an in-clinic consultation and 49% felt it was somewhat/equally as effective; furthermore, 48% (51/107) felt that such virtual consultations would be of benefit to them after the pandemic. 36% of respondents felt their virtual consultation was not as effective as an in-clinic review. Themes identified from open-ended questions included the lack of visual cues, lack of physical examination and effect on rapport and ease of open communication as the main pitfalls of virtual consultations. Patients with well-controlled symptoms appeared more satisfied with remote reviews compared to those with active disease, though on the whole respondents recognised the benefits, such as saving travel time and costs. Those who had an established relationship with their health professional appeared less concerned regarding virtual consultations though a recurring view was that newly diagnosed patients should have in-clinic appointments to build rapport and improve symptom control at an early stage.
Conclusions
Overall patients’ perspectives on virtual consultations varied widely though patients with well-controlled symptoms and those who had a previously established relationship with their healthcare professionals and well-controlled disease appeared more satisfied with remote reviews.
Journal Article