| 1. |
- Joshi, Mrudula, et al.
(author)
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Listening to patients, for the patients : The COVAD Study-Vision, organizational structure, and challenges
- 2024
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In: International Journal of Rheumatic Diseases. - : John Wiley & Sons. - 1756-1841 .- 1756-185X. ; 27:5
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Journal article (peer-reviewed)abstract
- Background: The pandemic presented unique challenges for individuals with autoimmune and rheumatic diseases (AIRDs) due to their underlying condition, the effects of immunosuppressive treatments, and increased vaccine hesitancy.Objectives: The COVID-19 vaccination in autoimmune diseases (COVAD) study, a series of ongoing, patient self-reported surveys were conceived with the vision of being a unique tool to gather patient perspectives on AIRDs. It involved a multinational, multicenter collaborative effort amidst a global lockdown.Methods: Leveraging social media as a research tool, COVAD collected data using validated patient-reported outcomes (PROs). The study, comprising a core team, steering committee, and global collaborators, facilitated data collection and analysis. A pilot-tested, validated survey, featuring questions regarding COVID-19 infection, vaccination and outcomes, patient demographics, and PROs was circulated to patients with AIRDs and healthy controls (HCs).Discussion: We present the challenges encountered during this international collaborative project, including coordination, data management, funding constraints, language barriers, and authorship concerns, while highlighting the measures taken to address them.Conclusion: Collaborative virtual models offer a dynamic new frontier in medical research and are vital to studying rare diseases. The COVAD study demonstrates the potential of online platforms for conducting large-scale, patient-focused research and underscores the importance of integrating patient perspective into clinical care. Care of patients is our central motivation, and it is essential to recognize their voices as equal stakeholders and valued partners in the study of the conditions that affect them.
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| 2. |
- Phuong, Thuy Nguyen Thi, et al.
(author)
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Clinical characteristics of Vietnamese patients with idiopathic inflammatory myopathies and autoantibodies to aminoacyl-transfer RNA synthetases
- 2021
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In: International Journal of Rheumatic Diseases. - : John Wiley & Sons. - 1756-1841 .- 1756-185X. ; 24:5, s. 663-670
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Journal article (peer-reviewed)abstract
- Objective To assess clinical phenotypes of anti-aminoacyl-transfer RNA synthetases (aaRS) autoantibodies in Vietnamese patients of Kinh ethnicity with idiopathic inflammatory myopathies (IIM). Methods In a cross-sectional study 23 patients with anti-aaRS autoantibodies were compared to 36 patients with other myositis-specific antibodies and to 69 seronegative patients with IIM. Assessments included muscle performance, extra-muscular involvement, and disease activity according to the International Myositis Assessment and Clinical Studies (IMACS). Sera were tested by a line immunoassay (Euroline Myositis Profile 4). Results The frequency of anti-Jo-1 antibodies was 56.5%, anti-EJ antibodies 26.1%, and anti-PL-7 antibodies 17.4%, while anti-PL-12 and anti-OJ antibodies were not present in any case. All patients with anti-aaRS autoantibodies had signs of myositis. At time of investigation 22/23 patients had muscle weakness, 52.2% arthritis, 34.8% Raynaud's phenomenon, 73.9% fever, 14.3% mechanic's hands and 56.5% dysphagia. Interstitial lung disease was present in 52.2%, and pulmonary hypertension in 56.5%. The anti-aaRS autoantibody positive group had higher disease activity in the domains of skin and pulmonary disease compared to the seronegative group and had lower disease activity in skeletal disease compared to the anti-melanoma differentiation-associated protein 5-positive patients. The clinical presentation of antisynthetase syndrome was similar between the aaRS autoantibody specificities with the exception of more frequent pulmonary hypertension in anti-Jo-1 positive patients. Conclusions Different aaRS autoantibody specificities may vary between different ethnic populations for reasons that still need to be clarified. Furthermore, the high frequency of pulmonary hypertension is noteworthy but otherwise clinical manifestations associated with aaRS autoantibodies did not differ from other ethnic populations.
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| 3. |
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| 4. |
- Shinjo, Samuel Katsuyuki, et al.
(author)
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Pain in individuals with idiopathic inflammatory myopathies, other systemic autoimmune rheumatic diseases, and without rheumatic diseases : A report from the COVAD study
- 2023
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In: International journal of rheumatic diseases. - : John Wiley & Sons. - 1756-1841 .- 1756-185X. ; 26:4, s. 727-739
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Journal article (peer-reviewed)abstract
- OBJECTIVES: To compare pain intensity among individuals with idiopathic inflammatory myopathies (IIMs), other systemic autoimmune rheumatic diseases (AIRDs), and without rheumatic disease (wAIDs).METHODS: Data were collected from the COVID-19 Vaccination in Autoimmune Diseases (COVAD) study, an international cross-sectional online survey, from December 2020 to August 2021. Pain experienced in the preceding week was assessed using numeral rating scale (NRS). We performed a negative binomial regression analysis to assess pain in IIMs subtypes and whether demographics, disease activity, general health status, and physical function had an impact on pain scores.RESULTS: Of 6988 participants included, 15.1% had IIMs, 27.9% had other AIRDs, and 57.0% were wAIDs. The median pain NRS in patients with IIMs, other AIRDs, and wAIDs were 2.0 (interquartile range [IQR] = 1.0-5.0), 3.0 (IQR = 1.0-6.0), and 1.0 (IQR = 0-2.0), respectively (P < 0.001). Regression analysis adjusted for gender, age, and ethnicity revealed that overlap myositis and antisynthetase syndrome had the highest pain (NRS = 4.0, 95% CI = 3.5-4.5, and NRS = 3.6, 95% CI = 3.1-4.1, respectively). An additional association between pain and poor functional status was observed in all groups. Female gender was associated with higher pain scores in almost all scenarios. Increasing age was associated with higher pain NRS scores in some scenarios of disease activity, and Asian and Hispanic ethnicities had reduced pain scores in some functional status scenarios.CONCLUSION: Patients with IIMs reported higher pain levels than wAIDs, but less than patients with other AIRDs. Pain is a disabling manifestation of IIMs and is associated with a poor functional status.
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| 5. |
- Shumnalieva, Russka, et al.
(author)
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Characteristics of emerging new autoimmune diseases after COVID-19 vaccination : A sub-study by the COVAD group
- 2024
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In: International journal of rheumatic diseases. - : John Wiley & Sons. - 1756-1841 .- 1756-185X. ; 27:5
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Journal article (peer-reviewed)abstract
- BACKGROUND: Despite the overall safety and efficacy of COVID-19 vaccinations, rare cases of systemic autoimmune diseases (SAIDs) have been reported post-vaccination. This study used a global survey to analyze SAIDs in susceptible individuals' post-vaccination.METHODS: A cross-sectional study was conducted among participants with self-reported new-onset SAIDs using the COVID-19 Vaccination in Autoimmune Diseases (COVAD) 2 study dataset-a validated, patient-reported e-survey-to analyze the long-term safety of COVID-19 vaccines. Baseline characteristics of patients with new-onset SAIDs and vaccinated healthy controls (HCs) were compared after propensity score matching based on age and sex in a 1:4 ratio.RESULTS: Of 16 750 individuals, 74 (median age 52 years, 79.9% females, and 76.7% Caucasians) had new-onset SAID post-vaccination, mainly idiopathic inflammatory myopathies (IIMs) (n = 23, 31.51%), arthritis (n = 15; 20.53%), and polymyalgia rheumatica (PMR) (n = 12, 16.40%). Higher odds of new-onset SAIDs were noted among Caucasians (OR = 5.3; 95% CI = 2.9-9.7; p < .001) and Moderna vaccine recipients (OR = 2.7; 95% CI = 1.3-5.3; p = .004). New-onset SAIDs were associated with AID multimorbidity (OR = 1.4; 95% CI = 1.1-1.7; p < .001), mental health disorders (OR = 1.6; 95% CI = 1.3-1.9; p < .001), and mixed race (OR = 2.2; 95% CI = 1.2-4.2; p = .010), where those aged >60 years (OR = 0.6; 95% CI = 0.4-0.8; p = .007) and from high/medium human development index (HDI) countries (compared to very high HDI) reported fewer events than HCs.CONCLUSION: This study reports a low occurrence of new-onset SAIDs following COVID-19 vaccination, primarily IIMs, PMR, and inflammatory arthritis. Identified risk factors included pre-existing AID multimorbidity, mental health diseases, and mixed race. Revaccination was well tolerated by most patients; therefore, we recommend continuing COVID-19 vaccination in the general population. However, long-term studies are needed to understand the autoimmune phenomena arising post-vaccination.
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| 6. |
- Sundbaum, Johanna, et al.
(author)
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Methotrexate treatment in rheumatoid arthritis and elevated liver enzymes : A long‐term follow‐up of predictors, surveillance, and outcome in clinical practice
- 2019
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In: International Journal of Rheumatic Diseases. - : John Wiley & Sons. - 1756-185X .- 1756-1841. ; 22:7, s. 1226-1232
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Journal article (peer-reviewed)abstract
- AimTo assess predictors of alanine aminotransferase (ALT) elevation in methotrexate (MTX) treated rheumatoid arthritis (RA) patients, and to describe the monitoring of liver enzymes, including handling and outcome of elevated ALT.MethodsAll RA patients starting MTX in January, 2005 to April, 2013 at a rheumatology clinic, (Uppsala University Hospital, Sweden) were identified from electronic medical records. Clinical and laboratory data were obtained from medical records, supplemented by telephone interviews. Predictors for ALT >1.5× over the upper limit of normal (ULN) were identified by multiple regression analysis.ResultsThe study comprised 213 RA patients starting MTX. During a mean follow‐up of 4.3 years, 6288 ALT tests were performed; 7% of tests with ALT were >ULN. ALT >1.5× ULN was observed in 44 (21%) patients and the strongest predictor was a pre‐treatment elevation of ALT (adjusted odds ratio = 6.8, 95% CI 2.2‐20.5). Recurrent elevations occurred in 70% of patients who continued treatment, and the proportion was similar in those with and without interventions, for example MTX dose reduction (67% vs 73%, P = 0.43). Seven patients (3%) permanently stopped MTX due to ALT elevation, and two were eventually diagnosed with non‐alcoholic fatty liver disease. No patient developed hepatic failure.ConclusionOnly a small number of ALT tests performed during MTX therapy in RA capture an elevation. A pre‐treatment elevation of ALT was the strongest predictor for early and recurrent ALT elevations during therapy. This study supports a more individualized approach to monitoring and handling of ALT elevations during MTX therapy in RA than recommended in current guidelines.
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| 7. |
- Kiadaliri, Aliasghar A, et al.
(author)
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Hospitalizations due to systemic connective tissue diseases: : Secular trends and regional disparities in Sweden, 1998-2016
- 2018
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In: International Journal of Rheumatic Diseases. - 1756-185X. ; 21:11, s. 1900-1906
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Journal article (peer-reviewed)abstract
- AIM: To investigate secular trends and regional disparities in hospitalizations due to systemic connective tissue diseases (SCTD) in Sweden from 1998 to 2016.METHOD: We identified all hospital admissions with a principal diagnosis of SCTD (ICD-10 codes: M30-M36) from the Swedish National Patient Register. Joinpoint regression was used to assess secular trends in age-standardized hospitalization rates (ASHR) and proportions of SCTD from all and musculoskeletal disorders hospitalizations. We also assessed the secular trends in the absolute and relative regional disparities of SCTD hospitalizations.RESULTS: We identified 89 333 SCTD hospitalizations (0.3% of all hospitalizations), of these about 69% were for women and 49% of patients were aged 15-64 years. Polyarteritis nodosa and related conditions (PANRC) and systemic lupus erythematosus (SLE) were the most frequent SCTD among those aged <10 years and 10-54 years, respectively. Joinpoint regression suggested that both rates and proportions of SCTD hospitalizations declined over time. These trends persisted among sex, age and diagnosis subgroups except for PANRC in patients aged 0-19 years who observed an average annual increase of 3.4% (95% CI: 1.8, 5.1) over the study period. There were 2.4-fold (95% CI: 2.3-2.5) difference between the regions with the highest and lowest mean ASHR. There was no statistically significant secular trend in the relative regional disparities, whereas the absolute regional disparity declined over time.CONCLUSION: There were substantial decreases in the absolute and relative burden of SCTD hospitalizations reflecting possible improvements in disease management in Sweden. The rising trend in PANRC among the youngest children warrants further investigation.
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| 8. |
- Dieppe, Paul, et al.
(author)
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Who should have knee joint replacement surgery for osteoarthritis?
- 2011
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In: International Journal of Rheumatic Diseases. - 1756-185X. ; 14:2, s. 175-180
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Journal article (peer-reviewed)abstract
- Knee joint replacement is an effective and cost-effective intervention for severe symptomatic osteoarthritis of the knee joint. However, utilisation rates vary hugely, there are no indications, it is difficult to know when (in the course of arthritis) it is best to operate, and some 10-20% of people who have this surgery are unhappy with the outcome, and have persistent pain. In this article we briefly discuss the variations in utilization of knee joint replacement, and then outline four different approaches to the selection and prioritisation of patients for this procedure. Consensus criteria, including appropriateness criteria are available, but if produced by professionals alone, they may conflict with the views of patients and the public. Databases and cohort studies can be used to attempt relating outcomes to baseline characteristics, but at present we can only account for a small percentage of the variance with this technique. Finally, we propose use of the 'capacity to benefit framework' to attempt providing guidance to both patients and healthcare professionals.
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| 9. |
- Ahmed, Aisha Siddiqah, et al.
(author)
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Proteasome inhibitor MG132 modulates inflammatory pain by central mechanisms in adjuvant arthritis.
- 2017
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In: International journal of rheumatic diseases. - 1756-185X. ; 20:1, s. 25-32
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Journal article (peer-reviewed)abstract
- AIMS: In rheumatoid arthritis (RA), pain and inflammation are initial symptoms followed by various degrees of bone and cartilage destruction. Previously, we have shown that reversible proteasome inhibitor MG132 attenuates pain and joint inflammation in a rat model of adjuvant-arthritis. Our present study aims to study the effects of MG132 on molecular changes in the dorsal root ganglia (DRG) and in the spinal cord (SC) using the same animal model.METHODS: Arthritis was induced by heat-killed Mycobacterium butyricum in rats. The expression of substance P (SP) was analyzed by quantitative reverse transcription polymerase chain reaction and immunohistochemistry in DRG and in the SC. The nuclear factor-κB (NF-κB) DNA-binding activity in the SC was analyzed by electromobility shift assay.RESULTS: Arthritic rats treated daily with MG132 demonstrated a marked reduction of SP gene expression in the DRG and number of SP-positive cells was reduced. In the spinal cord of arthritic rats elevated SP messenger RNA levels were normalized and NF-κB-DNA-binding activity was down-regulated in arthritic rats treated with MG132.CONCLUSION: Our results indicate that proteasome inhibitor MG132 attenuates pain in adjuvant arthritis by targeting the sensory neuropeptide substance P in the peripheral and central nervous systems. These effects may be mediated through the inhibition of NF-κB activation.
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