We aimed to quantify somatosensory processing in long COVID and interactions between somatosensory processing, fatigability, fatigue, autonomic function, mood and illness beliefs. Eighty eight participants (44 long COVID and 44 controls) were invited to complete two testing sessions, where fatigue was induced by either a cognitive or physical task in a cross-over design; all participants completed at least one session. Baseline questionnaires assessed trait fatigue, autonomic symptoms, mood, and illness beliefs. Pre- and post-task measures included somatosensory processing, state fatigue, perceived effort, and heart rate variability (HRV). Group differences and task-related changes were analysed using multivariate and linear mixed models. There was no multivariate group effect on baseline somatosensory measures (p = .172), nor did they change following exertion or associate with post-exertion fatigue. Long COVID participants reported greater fatigue than controls, with 64% meeting criteria for severe fatigue. State fatigue was greater at baseline, throughout both exertion tasks (all p <.001), and increased more during exertion compared with controls. Despite this, cognitive and physical performance changed similarly across tasks, with no group differences in fatigability (p = .199–.441). Long COVID participants had lower resting HRV, indicating autonomic dysfunction, but HRV was not associated with fatigue. Only group status (p <.001) and pre-task fatigue (p <.001) were associated with post-exertion fatigue. Within long COVID participants, greater depression (p <.001) and perceived illness threat (p = .033) were associated with greater trait fatigue. The absence of somatosensory abnormalities provides no support for the sensory attenuation model of fatigue in long COVID.
Abstract Background Inflammatory arthritis comprises lifelong conditions, such as rheumatoid arthritis, axial spondyloarthritis and psoriatic arthritis that require long-term treatment and regular monitoring. People with inflammatory arthritis usually require long-term treatment with immune-suppressing medications and are typically reviewed in outpatient clinics every 6–12 months, accounting for 1.3 million appointments/year in the UK. The National Health Service (NHS) is implementing a move to patient-initiated follow-up (PIFU) where patients request appointments as required. To date, there are small studies of PIFU in rheumatoid arthritis and none in other arthritis. Research is required to configure services to optimise outcomes, inform patients and clinicians of the effectiveness and safety of PIFU and ensure that suitable patients are selected for this pathway. Methods TaILOR is a two-arm, pragmatic, parallel group, superiority, randomised controlled clinical study, with an embedded qualitative study conducted across 32 secondary care NHS sites in the UK. Eligible participants must be 18 years or older, with stable inflammatory arthritis, and diagnosed for at least 2 years. In addition, they need to be suitable for PIFU based on NHS England guidance and in the opinion of their usual care team; 438 participants will be randomised in a 1:1 ratio to either PIFU, with a fixed 24-month safety net appointment, or standard care, with 6–12 monthly follow-up visits. The trial includes an internal recruitment feasibility pilot, as well as health economics and qualitative analyses. The primary outcome will assess the effectiveness of PIFU compared to standard care on musculoskeletal quality of life at 24 months. Secondary outcomes include quality of life, incremental costs, cost-effectiveness, treatment escalation, disease activity, flares, patient confidence in interactions with their clinical team (patient perceived efficacy in patient-physician interactions), depression and acceptability of PIFU (via qualitative interviews). Discussion As a national multi-centre study, this will provide the definitive evaluation of PIFU for inflammatory arthritis. Qualitative analysis will generate insights into individual and contextual factors affecting the acceptability of PIFU, identify variation across sites or between patients and provide information on how this can be addressed. Trial registration ISRCTN ISRCN10480648. Registered on 17 January 2025. Protocol version {2}: Version 3.0 date 04 Dec 2025.
ABSTRACTThe impact of skin diseases can be devastating, encompassing physical symptoms such as bumps, rashes, hyper‐ or loss of pigmentation, redness, itch, pain and scarring. The consequences on mental health and well‐being are often more detrimental, impacting the ability to conduct routine daily activities and engage socially. Given the prevalence of dermatological conditions, it is critical that resources are available to address these needs. We conducted a review of dermatology patient advocacy groups and health organizations’ websites to determine what types of resources to support mental health and well‐being currently exist globally for individuals with skin conditions and identified 26 websites featuring resources such as sections dedicated to providing mental health information, programs on mental health topics and coping strategies, peer support forums, and counselling. Clinical trials and observational studies have demonstrated that many of these tools improve key mental health and well‐being‐related symptoms. In order for new and existing resources to be effective on a global scale, they should be delivered through methods that are sensitive to a spectrum of mental health‐related stigma, and cultural beliefs. In parts of the world where individuals value privacy above openly speaking about one's feelings, or where smartphone adoption is ubiquitous (i.e., Europe, South‐East Asia), digital health resources might hold the most potential for uptake. In regions such as Africa, and remote and rural Western Pacific, task‐shifting, a process whereby laypeople are trained by health professionals to deliver community‐based interventions, may be a promising format given mental health professional shortages. To provide optimal support for the mental health and well‐being of those around the world with skin conditions, future efforts should focus on evaluation of the patient benefits offered by existing resources, and their adaptation and expansion to befit other world regions, and align with varied cultural needs and beliefs.
OBJECTIVES:To assess diagnostic delay and its associated factors globally, in a large sample of patients included in the International Map of Axial Spondyloarthritis (IMAS). METHODS:IMAS is a cross-sectional online survey (2017-22) of 5557 axial spondyloarthritis (axSpA) patients from 27 countries. Diagnostic delay was calculated as the difference between age at diagnosis and age at first symptom onset reported by patients. Associations between diagnostic delay and regions, sociodemographic characteristics and disease-related factors were explored through univariable and multivariable linear regression analysis. RESULTS:Data from 5327 patients who reported data on diagnostic delay in IMAS survey were analysed: 3294 were from Europe, 752 from North America, 590 from Asia, 545 from Latin America and 146 from Africa. Overall, patients reported a mean diagnostic delay of 7.4 years (median: 4.0) since symptom onset, with substantial variation across regions; the highest delay was in South Africa and the lowest in Asia. The variables associated with longer diagnostic delay in the final multivariable regression model were: younger age at symptom onset (b = -0.100), female gender (b = 2.274), being diagnosed by a rheumatologist (b = 1.163), greater number of heathcare professionals (HCPs) seen before diagnosis (b = 1.033) and history of uveitis (b = 1.286). CONCLUSION:In this global sample of axSpA patients the mean diagnostic delay was 7.4 years, and showed significant differences across regions. Younger age at symptom onset, female gender, diagnosis made by a rheumatologist, greater number of HCPs seen before diagnosis and history of uveitis were the parameters associated with a longer diagnostic delay in axSpA patients.
Objectives Little is known about the ideal service delivery model and shortcomings in patient experiences in the NHS for patients with psoriatic arthritis (PsA). The objective of this work was to identify unmet needs perceived within the current health service delivery model for PsA from the UK Psoriatic Arthritis Priority Setting Partnership (PsA-PSP).Methods An online survey was conducted in 2020 and distributed to people with PsA, their carers and clinicians to identify research priorities in PsA. The participants were asked to submit three questions unanswered in PsA research. A proportion of submissions related to health service delivery were identified, which were deemed as out of scope for the main PsA-PSP but nevertheless important to report. Content analysis was used to analyse these submissions separately.Results We reviewed 138 submissions that were not related to the James Lind PSP and research priorities in PsA. Among these, 118 (85.5%) were focused on health service delivery and were classified into five main themes: rheumatology service, primary care navigation, education, holistic care, and ethnicity, diversity and inclusion. Further analysis within the rheumatology service theme revealed additional sub-themes that emphasized integrating multidisciplinary services, improving access to advice lines and ensuring fair access to treatments.Conclusion The five key themes provide valuable insights into the important areas of interest within health service delivery in the UK. By understanding these themes, policymakers, healthcare providers and researchers can better prioritize their efforts and address the specific care needs of people with PsA, their care providers and clinicians.
This study aimed to quantify somatosensory processing in long COVID and examine interactions between somatosensory processing, fatigability, state fatigue, trait fatigue, autonomic function, mood and illness beliefs. Eighty-eight participants (44 long COVID and 44 controls) completed at least one testing session involving either a cognitive or physical task. Pre and post-task measures included somatosensory processing, state fatigue, perceived effort, and heart rate variability (HRV). Trait fatigue, autonomic symptoms, mood, and illness beliefs were assessed using validated questionnaires. Group differences and task-related changes were analysed using multivariate and linear mixed models. There was no multivariate effect of group on baseline somatosensory attenuation or gating (p = .172), nor did these measures change following exertion, or associate with post-exertion fatigue. Long COVID participants reported greater fatigue than controls, with 64% meeting criteria for severe fatigue. State fatigue was greater at baseline, throughout both exertion tasks (all p <.001), and increased more during both tasks compared with controls. Despite this, cognitive and physical performance improved similarly across the task, with no group differences in fatigability (p = .199–.441). Long COVID resting HRV was lower, indicating autonomic dysfunction, but was not associated with fatigue. Only group status (p < .001) and pre-task fatigue (p < .001) were associated with post-exertion fatigue. Within long COVID participants, greater depression (p < .001) and perceived illness threat (p = .033) were associated with higher trait fatigue. The absence of somatosensory attenuation or gating abnormalities provides no support for sensory attenuation models of fatigue in long COVID.
OBJECTIVES:Skin conditions carry a substantial psychological burden but support for patients is limited. Digital technology could support patient self-management; we found preliminary evidence for the effectiveness and acceptability of digital psychological interventions for adults living with skin conditions. We have, therefore, developed a complex digital intervention called MiDerm with patients. This qualitative study explored the prospective acceptability of the complex intervention delivered via a smartphone application (app), and possible barriers and facilitators to use. DESIGN:Qualitative research involving a hybrid inductive-deductive approach. Data collection and analysis were theoretically informed by The Common-Sense Model of Self-Regulation, Theoretical Framework of Acceptability and the Capability, Opportunity, Motivation - Behaviour Model. METHODS:Eight synchronous online group interviews with 43 English-speaking adults (≥ 18 years) with skin conditions. Data were analysed using Reflexive Thematic Analysis. RESULTS:Three superordinate themes were generated: (1) Patients' attitudes and concerns about the MiDerm app; (2) Need for personal competence, autonomy and relatedness for effective self-management; and (3) Physical, psychological and social barriers to app use. CONCLUSION:Adults with skin conditions, mainly those with vitiligo and psoriasis living in the UK, expressed the need for support to self-manage the psychological aspects of their condition(s). The idea of a new intervention comprised of informational, emotional, behavioural and peer support, delivered via a smartphone app was welcomed and may be especially beneficial for specific patients. Identified barriers must be addressed to maximize engagement and giving users choice, flexibility and control is imperative to this. We have since developed the MiDerm app using these findings.
BackgroundLong COVID is characterised by persistent symptoms, especially fatigue. We investigated the severity and impact of cognitive and physical fatigue in Long COVID, exploring associations with autonomic symptoms, interoceptive sensibility, illness perceptions and distress, underpinned by a novel framework integrating active inference and the Common Sense Model of Self-Regulation.MethodOnline cross-sectional survey between November 2024 and September 2025. Adults with self-reported COVID-19 and ≥12 weeks of fatigue symptoms were recruited via convenience sampling and completed validated questionnaires assessing fatigue, autonomic symptoms, interoceptive sensibility, illness perceptions and distress. Correlations and regression analyses examined associations between variables. Results183 participants completed the survey. Fatigue severity and impact were high, with physical fatigue rated more severe (Z = −2.96, p = .003) and impactful (Z = -8.714, p < .001) than cognitive fatigue. Correlational analyses showed moderate-to-strong associations between fatigue and autonomic symptoms, interoception, illness perceptions and distress. In regression models, these variables explained 21–54% of variance in fatigue. Autonomic symptoms were positively associated with cognitive and physical fatigue. Depression was associated with cognitive fatigue. Illness perceptions were associated with physical, but not cognitive fatigue. Interoceptive sensibility showed both positive and negative associations with fatigue.ConclusionsLong COVID fatigue is severe and multifaceted. It involves a dynamic interplay between dysfunction in physiological systems, illness perceptions, and distress, with interactions varying across dimensions of fatigue. We propose a framework of interacting physiological and psychological factors that shape the prediction and processing of bodily signals, ultimately giving rise to fatigue.
Immune-mediated inflammatory diseases (IMIDs) are a wide group of autoimmune conditions that share common inflammatory pathways, meaning that people with one IMID are at elevated risk of developing another. People living with IMIDs are at increased risk of co-morbidities and quality of life (QOL) is negatively impacted. The economic cost of IMIDs is high both in terms of healthcare resource and lost productivity. In particular, there is significant unmet need in terms of clinical outcomes and patient satisfaction for people living with complex IMID (multiple IMIDs, co-morbidities and people for whom IMID(s) have a significant impact on QOL). Existing clinical service models focused on single specialty management provide fragmented care caught between individual specialities with delays to decisions and treatment plans, with individual IMID specialities competing for the same scarce National Health Service (NHS) resources. This siloed approach often focuses on suppressing inflammatory activity which may not adequately address the range of impacts on the person living with IMID. These issues have prompted a movement towards collaborative cross-specialty care. A collaborative cross-specialty approach has the potential for sharing knowledge and resources, to ensure timely referral and diagnosis, more effective use of available time for clinical consultation and early recognition and treatment of concomitant IMIDs. Compared with a traditional siloed model, a cross-specialty approach was associated with QOL theme benefits including positive patient experience and perceived disease control. Involvement of a cross-specialty team and well-defined referral criteria are key to optimal collaborative cross-specialty working. Existing initiatives have shown that relatively small changes to existing practice and cross-speciality collaborative working can result in bespoke solutions, such as parallel clinics, combined clinics and multidisciplinary team (MDT) sessions, face-to-face or virtually depending on the individual needs. A patient-centric framework, with individualised care, helps to address multimorbidity whilst improving physical and mental well-being. The development of a cross-specialty service for complex IMID cases has the potential to reduce the number and length of consultations, and available data indicate that such innovations may improve clinical outcomes, patient experience and quality of care in a cost-effective manner and suggest wider societal benefits.
OBJECTIVES:This study aimed to develop evidence-based points to consider (PtC) and consensus definitions of difficult-to-manage (D2M) and treatment-refractory (TR) psoriatic arthritis (PsA). METHODS:A multidisciplinary international European Alliance of Associations for Rheumatology (EULAR) task force (TF) of 27 members, including rheumatologists, dermatologists, health practitioners, and patient partners, was established, and the EULAR standardised operating procedures, including a systematic literature review and a consensus process, were followed. RESULTS:The TF formulated 4 overarching principles addressing the proportion of patients with PsA with an unsatisfactory treatment response despite the best standard of care, and for which the causes are likely multifactorial. Six PtC highlight criterion relevant for subsequent definitions including failure to achieve or maintain response to ≥2 biological/targeted synthetic disease-modifying antirheumatic drugs with ≥2 different mechanisms of action; management of signs and symptoms perceived as problematic by the rheumatologist and/or the patient, and evidence of persistent disease activity in the presence of extramusculoskeletal manifestations and/or comorbidities and/or objective evidence of inflammatory activity. Finally, the following 2 definitions were developed: (1) D2M PsA, an umbrella term including drivers such as inflammation, comorbidities, psychosocial or other factors, incorporating (2) TR PsA, defined by persistent disease activity and objective evidence of active inflammation. CONCLUSIONS:EULAR proposes 2 consensus definitions to identify a D2M PsA population, including a TR subgroup. These definitions should now be tested in research studies to understand disease pathogenesis and improve care for people living with PsA.
OBJECTIVES:To develop a consensus-based expert definition of difficult-to-manage (D2M) axial spondyloarthritis (axSpA), incorporating treatment-refractory (TR) disease. METHODS:A literature review was conducted in 2022 to identify potential definitions for D2M/TR axSpA from prior studies, followed by a 2-round Delphi consensus process conducted in 2022 and 2023 to identify components of D2M axSpA. Based on the results of the Delphi process, a draft of the D2M axSpA definition was developed and presented to the expert task force, including patient representation, and, subsequently, to the Assessment of SpondyloArthritis International Society (ASAS) membership for endorsement in January 2024. RESULTS:Consensus was reached on a D2M definition encapsulating treatment failure (treatment according to the ASAS-European Alliance of Associations for Rheumatology recommendations and failure of ≥2 biological or targeted synthetic disease-modifying antirheumatic drugs with different mechanisms of action unless contraindicated), suboptimal disease control, and physician or patient acknowledgement of problematic signs/symptoms in patients diagnosed with axSpA by the rheumatologist. This definition represents a broad concept that includes various reasons that lead to an unsatisfactory treatment outcome. TR axSpA is covered by the D2M definition but requires a history of treatment failure, the presence of objective signs of inflammatory activity, and the exclusion of noninflammatory reasons for nonresponse. The proposed D2M definition incorporating TR disease was endorsed by ASAS at the annual meeting in January 2024, with 89% votes (109/123) in favour of it. CONCLUSIONS:The ASAS D2M axSpA definition, including TR disease, allows for identifying patients with unmet needs, paving the way for further research in this condition and its clinical care improvement.
This article investigates how living with, and self-managing, acne and post-inflammatory hyperpigmentation and scarring impacts adults living with these conditions. Eight adults took part in individual qualitative interviews. Framework analysis generated four themes: (1) acne blame; (2) control at any cost; (3) the business of skinfluencers; and (4) 'it's your hormones'. Those with acne and PIH&S are currently underserved by dermatology and psychodermatology provision, and additional funding and research is needed to provide psychological and self-management support for this group.