Citations

The long‐term clinical outcomes and associated prognostic factors in contactin‐associated protein‐like 2 (CASPR2)‐antibody diseases are unknown. A total of 75 participants with CASPR2 antibodies were longitudinally assessed for disability, quality‐of‐life, and chronic pain. Although most symptoms improved within 6 months of treatment, neuropathic pain and fatigue were the most immunotherapy refractory, and persisted for up to 6 years. Furthermore, these two factors—but not CASPR2 antibody levels or subclasses—independently predicted worse disability and quality‐of‐life at 24 months. Quality‐of‐life varied widely for any given modified Rankin Scale score, indicating a divergence between patient and clinician assessed outcomes. Further work should study the relative importance of these measures, and the immunopathogenesis underlying intractable symptoms. ANN NEUROL 2025;97:521–528

Objective: Pulmonary involvement is commonly observed in anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV), presenting with manifestations such as diffuse alveolar hemorrhage, inflammatory infiltrates, pulmonary nodules, and tracheobronchial disease. We aimed to identify distinct subgroups of tracheobronchial disease patterns in patients with anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) using latent class analysis (LCA), and to evaluate their clinical characteristics and outcomes. Methods: We conducted a retrospective cohort study using electronic medical records of patients aged >18 years diagnosed with AAV and tracheobronchial disease between 1 January 2002 and 6 September 2022. Patients with follow-up <6 months were excluded. LCA was employed to identify disease subtypes based on 10 pre-defined indicators. Maximum likelihood estimation with 10 repetitions per model ensured robustness in model selection, guided by the Akaike information criterion (AIC). Patient and disease characteristics were summarized and compared across predicted classes. Statistical analyses included Kruskal–Wallis and Fisher’s exact tests for continuous and categorical variables, respectively. The primary outcome was time to relapse of the tracheobronchial inflammation after starting immunosuppressive medication, analyzed using the Kaplan–Meier method and log-rank tests. Secondary outcomes included severity of pulmonary disease on pulmonary function tests, endoscopic interventions, tracheostomy, or mortality during follow-up. Results: Among 136 identified AAV patients assessed for tracheobronchial involvement, 111 (81.6%) were included after excluding 25 without tracheal or bronchial disease. Predominant findings included subglottic stenosis (91.0%), lower tracheal stenosis (16.2%), and bronchial stenosis (17.1%). LCA identified a three-class model as optimal: tracheal predominant (n = 94), tracheobronchial (n = 12), and bronchial predominant (n = 5). Tracheal predominant patients showed reduced risk of ear, eye, and lower respiratory manifestations, with milder obstruction on pulmonary function testing (PFT). Tracheobronchial-class patients were prone to saddle nose deformity (50%), extensive lower respiratory involvement (91.7%), and renal disease (66.7%). Bronchial predominant patients exhibited severe obstructive disease (median forced expiratory volume in 1 s (FEV1)% predicted: 58, IQR 34–66; FEV1/forced vital capacity (FVC) ratio: 56.9, interquartile range (IQR) 43–63.3) but lacked systemic AAV manifestations. LCA classes did not predict outcomes such as endoscopic intervention, tracheostomy, recurrent tracheobronchial narrowing, or mortality. Conclusion: LCA shows promise in subtype stratification of AAV patients, yet its utility in predicting outcomes and guiding treatment remains limited based on our analysis. Future studies with enhanced phenotypic data and larger cohorts are warranted to improve predictive accuracy.

Background and Objectives: Fibromyalgia has many unmet needs relating to treatment, and the delivery of effective and evidence-based healthcare is lacking. We analyzed social media conversations to understand the patients’ perspectives on the lived experience of fibromyalgia, factors reported to trigger flares of pain, and the treatments being discussed, identifying barriers and opportunities to improve healthcare delivery. Methods: A non-interventional retrospective analysis accessed detail-rich conversations about fibromyalgia patients’ experiences with 714,000 documents, including a fibromyalgia language tag, which were curated between May 2019 and April 2021. Data were analyzed via qualitative and quantitative analyses. Results: Fibromyalgia conversations were found the most on Twitter and Reddit, and conversation trends remained stable over time. There were numerous environmental and modifiable triggers, ranging from the most frequent trigger of stress and anxiety to various foods. Arthritis and irritable bowel syndrome (IBS) were the most frequently associated comorbidities. Patients with fibromyalgia reported a wide range of symptoms, with pain being a cardinal feature. The massage, meditation and acupuncture domains were the most reported treatment modalities. Opportunities to improve healthcare delivered by medical providers were identified with current frustration relating to a lack of acknowledgement of their disease, minimization of symptoms and inadequately meeting their care needs. Conclusions: We developed a comprehensive, large-scale study which emphasizes advanced natural language processing algorithm application in real-world research design. Through the extensive encapsulation of patient perspectives, we outlined the habitual symptoms, triggers and treatment modalities which provide a durable foundation for addressing gaps in healthcare provision.

Abstract Patient Initiated Follow-Up (PIFU) is gaining momentum in the NHS, aiming to optimize outpatient care amidst rising service demands. PIFU is valuable in rheumatology, where the increasing demand for ongoing management exacerbates the patient backlog. Importantly, PIFU has demonstrated comparable safety and outcomes to traditional care in numerous studies. PIFU empowers patients, drives personalized care, increases efficiency, and has the potential to reduce waiting lists by allowing services to focus on new and acute cases. Effective PIFU implementation includes careful selection of patients, educating patients and healthcare staff, well defined operational guidelines, and robust remote monitoring. Digital solutions can enhance PIFU through patient education, active remote monitoring and streamlined escalation. Electronic Patient Reported Outcome Measures (ePROMs) provide a suitable and safe metric to monitor patients remotely. Given the potential benefits, outpatient departments should consider investing in PIFU as a solution to current healthcare delivery challenges and as a means for future proofing clinical systems against increasing service demands.

Abstract Background/Aims Features of centralised pain, encompassing widespread pain and non-pain features such as multisensory hypersensitivity, fatigue, and sleep disturbance are common in RA. We hypothesise that centralised pain in early RA affects response to standard first-line treatment. Methods Prospective cohort study of adults with a clinical diagnosis of RA recruited from the early inflammatory arthritis clinic, Oxford University Hospitals, who completed an online assessment within two weeks of starting a DMARD. Centralised pain was assessed using three measures: the 2016 Fibromyalgia Survey Criteria (0-31), Central Sensitisation Inventory (CSI, 0-100), and PainDetect (0-38). The primary outcome, bodily pain, was assessed using the Short Form-36 Bodily Pain Scale (BPS), where lower scores indicate worse pain severity. During follow-up, participants completed three sets of follow-up questionnaires at 3-, 6- and 12-months. Linear mixed effects models were used to account for repeated measurements and patient variability. Three models were fitted, for an association between baseline values of each centralised pain measure with BPS over time. An interaction between centralised pain scores with time was fitted to assess for effect of the exposure on change over time. Age, sex, and symptom duration at baseline were included as confounding variables. Ethical approval was granted by South Central Oxford B Research Ethics Committee. Results Of 149 participants, 117 (79%) completed follow-up: median (IQR) age 59.8 (24.6) years; 36% male; 30% with symptoms &gt;1 year at baseline. There were no significant baseline differences among those lost to follow-up, apart from a longer symptom duration (53% vs 30% symptom duration &gt;1 year; P = 0.033). At baseline, median (IQR) Fibromyalgia Survey Criteria, CSI, and PainDetect scores were 12 (6), 36 (17), and 14 (9) respectively. The median (IQR) BPS at baseline was 32.5 (22.5). Measures of centralised pain were moderately-to-strongly correlated with each other, and with BPS. Individuals with symptoms for &gt;1 year had higher scores on the PainDetect (P = 0.0015), but not the CSI (P = 0.0545) or Fibromyalgia Survey Criteria (P = 0.672). After adjusting for age, sex, and symptom duration, there was a significant association between centralised pain at baseline and BPS over follow-up, e.g.; for every unit increase in the fibromyalgia survey criteria at baseline, the BPS decreased by 2.40 (95%CI -3.29, -1.49; P &lt; 0.001) points over follow-up. Similar relationships were seen with the CSI and PainDetect scores. Conclusion Centralised pain measures in early RA patients can be indicative of the severity of bodily pain experienced during the subsequent 12 months after starting a DMARD treatment. Recognising and assessing centralised pain in early RA patients may enable us to tailor more effective and individualised treatment regimens. Further studies, especially those utilising neuroimaging and QST, are essential to elucidate the neural mechanisms underlying the impact of centralised pain on treatment outcomes in RA. Disclosure E. Kelleher: None. A.J. Wall: None. M.T. Sanchez-Santos: None. V. Wanigasekera: None. A. Irani (nee Soni): None.