ABSTRACT
Introduction. The poster of the Dutch Myositis Working Group (DMWG) aims to inform people about her goals, activities and ambitions. The group is run by seven patients, representing all types of myositis, supported by Spierziekten Nederland, the umbrella patient organization for neuromuscular disorders in The Netherlands and 4 myositis specialists as medical advisors. Chair: Ingrid de Groot. Contact email: myositis@spierziekten.nl Goals and ambitions of the Dutch myositis working group: * I n collaboration with medical advisors to provide information about IIM (idiopathic inflammatory myopathies) or myositis to newly diagnosed patients and their families: IIM types, symptoms, diagnosis, (new) treatment options, prognosis, inform them about the myositis expertise centres etc. * To connect and support people with all types of IIM: dermatomyositis (DM), polymyositis (PM), Anti Synthetase Syndrome (ASyS), immune mediated necrotizing myopathy (IMNM), juvenile dermatomyositis (JDM), overlap myositis. * To raise awareness of myositis among the public, health care professionals and researchers, pharmaceutical companies? * To collaborate with clinicians, researchers and funds on a national and international level with the aim to improve (clinical) care and research. * To stimulate and participate in the development and conducting of clinical trials. * To collaborate with myositis working groups and patient organisations abroad. * To represent the patient perspective within in the Myositis Network Netherlands and (inter)national myositis study groups. * Patient advocacy. Activities and services: * In person or online meetings aiming to offer moral support and an opportunity to share experiences, concerns etc. or just to socialize. Three times a year we organize separate meetings for people with IBM, for people with other IIM and for caregivers. * Website updates on treatment, guidelines, (inter)national research, activities and actualities (e.g. Covid situation). * Supply patients with brochures for GP/ family doctor, physiotherapist etc. * Online (secured) platform for members. * Annual patient conference with diagnosis specific scientific programs. * Monthly newsletters: these are personalized which means they contain mainly news on the receivers type of IIM (e.g. IBM or ASyS) and information on general topics concerning all people with IIM or neuromuscular disorder. * In person meetings and / or online webinars on general topics e.g. living with a chronic condition, work, pain, fatigue. * Annual meetings with medical advisors: the working group pays a visit to all medical advisors in their respective hospitals. * Representation at (inter)national conferences. * Representation in projects such as guidelines development. * Collaboration in (inter)national studies leading to enrolling Dutch patients, researchers and clinicians in multi-centre studies, (co-) authorships in publications and to presentations during conferences (Treat NMD, IMACS, MNN). * To advise and recommend on research proposals from patient perspective. * To advise decision makers on continuation of expert centres from patient perspective. Collaborations: * Myositis Network Netherlands: patient representation on the board. * OMERACT (Outcome Measures in Rheumatology): Patient Research Partner of the Myositis Working Group. * IMACS (International Myositis Assessment and Clinical Studies Group): steering committee member of Exercise & Rehabilitation Group, led by Helene Alexanderson, ass.prof PhD, RPT). * ENMC (European Neuromuscular Centre): patient representation in myositis workshops. * EULAR (European League against Rheumatism): member of PARE and Patient Research Partner. * GCOM. * ERN - NMD (European Reference Network for Neuromuscular Diseases): member of NMD working group led by em. prof. dr. Marianne de Visser. * Patient organizations for people living with myositis . We are in this together Since myositis is a (very) rare disease, the 'myositis community' is a small one although we're happy to say that it is expanding quite rapidly. Through our inte sive involvement in several national and international studies and research projects we now have close contacts with many myositis experts across the globe, which makes it easier to keep up with actualities and developments concerning research, treatment etc. and to disseminate this knowledge to our members. This helps us to inform, support and advocate for the Dutch people living with myositis and their families and at the same time it offers opportunities to give something back: by sharing with the research community and clinicians our experiential knowledge of the consequences of myositis on everyday life. That way we can contribute to more meaningful research. We can only go forward if we do this together! That is why we are very ambitious in our efforts to contribute to myositis research. Here we list our collaborative efforts: * In 2019 the Myositis Network Netherlands of clinicians and researchers with expertise in IIM was established in which the DMWG is representing the patient perspective by a member on the board. * In OMERACT Myositis Working Group a member of the DMWG is one of the two Patient Research Partners and as such an equal partner of this study aiming to define a set of core patient reported domains with regard to the quality of life and respective instruments for use in IIM. The involvement of the DMWG has led to the opportunity for Dutch patients to participate in Delphi surveys and to an opportunity for Dutch myositis clinics to collaborate in the longitudinal study that emerged from this. * The IMACS network is an important part of our international network. One of our DMWG members is member of the Executive Committee of the Exercise & Rehabilitation Group and as such can facilitate for Dutch patients to become involved in the current study with the ultimate objective to develop recommendations for exercise in all types of IIM. * Members of the DMWG participated in several ENMC workshops on IIM as patient representatives and will continue to do so in the future. * Through a PARE membership in EULAR and membership of the study group of 'collaborative research' the DMWG hopes to raise awareness of myositis within the influential EULAR community and to speak up on behalf of the patients in Europe living with IIM. * One of our members is member of the GCOM committee responsible for the patient program of GCOM and shares the ambitions of this GCOM committee to increase the involvement of patients in this very important IIM conference. * One DMWG member joined the ERN- Neuromuscular Disease group and as such represents the people with IIM living throughout Europe. * DMWG has ambitions to empower people living with IIM and to connect with them, crossing borders by doing so. We have close and amicable relationships with patient organisations in Australia, Czech Republic, Germany, Sweden, UK and USA. * Empowering patients is one of our goals and we accomplished this for instance in Sweden. On invitation by prof. dr. Ingrid Lundberg our chair visited the Karolinska Institute, spent a week with their myositis team and in return was one of the speakers on the annual patient meeting and helped the Swedish patients establish their own myositis working group.
ABSTRACT
Background: Inhaled corticosteroid therapy (ICS) is an important therapeutic modality in chronic respiratory diseases, and patients with chronic obstructive pulmonary disease (COPD) are severely affected by COVID-19. The role of ICS in COVID-19 has been studied, however, ambiguities remain, especially for COPD patients. Aim(s): To investigate whether ongoing regular exposure to ICS affects risk, severity or survival in SARS-CoV-2 infection, using a large linked Swedish population register database. Method(s): From January to December 2020, we studied in two study populations (general population and COPD patients) three different study cohorts: 1. the whole group, 2. COVID-19-diagnosed individuals, and 3. hospitalized COVID-19 patients. Ongoing regular exposure to ICS was defined as >=1 ICS prescriptions during the year before the index date. Studied outcomes were: COVID-19 diagnosis, hospitalization, intensive care and death. Result(s): After matching, in the general population ICS therapy was not associated with an increased onset or COVID-19, hospitalization, ICU admission or fatal outcomes, both in the general cohort and COPD patients group. Similarly, in patients who acquired COVID-19, ICS therapy was not associated with hospitalization, ICU admission or death in both groups. A slight increase for ICU admission was observed in the hospitalized general patients cohort who received ICS therapy (H.R. 1.22 [1.05, 1.42]), however, COPD patients did not have an increased risk for adverse outcomes. Conclusion(s): Patients receiving ICS therapy did not have an increased risk for acquiring Covid 19, hospitalization, ICU admission or fatal outcomes.
ABSTRACT
Background: It is still unclear whether people with HIV (PWH) are more likely to have severe outcome of COVID-19. We aimed to assess this association using nation-wide register data. Methods: We included all adults hospitalized with a primary diagnosis of COVID-19 (ICD-10;U07.1, U07.2) in Sweden between Feb 1, 2020, and Aug 31, 2021, identified from the National Patient Register. The study population was linked to the National HIV Quality Register (n= 8 032), the Swedish Intensive Care Register, the Swedish Cause of Death Register, and the LISA database for labour market studies. Using multivariate logistic regression models, we estimated adjusted odds ratios (aORs) and 95% confidence intervals (CIs) for severe COVID-19 (intensive care admission or 90-day mortality), by HIV-status. Results: We included 121 PWH and 64 764 HIV-negative individuals hospitalized with COVID-19. PWH were younger (median age 57y vs. 65y, p<0.001) and more likely to be men (68% vs. 57%, p=0.015) compared to HIV-negative. There was no difference in level of education, level of income or number of comorbidities. Most hospitalized PWH had undetectable HIV-RNA (93%) and high CD4 counts (median 560, IQR 376-780). Severe COVID-19 was identified in 17 (14%) PWH and 14 648 (23%) HIV-negative. Ten (8%) PWH and 10 217 (16%) HIV-negative died within 90 days. HIV status was not associated with higher odds of severe COVID-19 (aOR 0.88, 95% CI 0.52-1.49). Higher age was associated with severe COVID-19 in PWH (aOR 1.08, 95% CI 1.02-1.15). PWH with one or more comorbidities were four times more likely to have severe COVID-19 (aOR 4.3, 95% CI 1.1-16.7, ref PWH with no comorbidity). Neither level of income nor level of education or migrant status was associated with severe COVID-19 in PWH. Level of HIV-RNA, current CD4, nadir CD4, and mode of HIV-transmission was not associated with severe COVID-19. PWH admitted to the ICU were six times more likely treated with tocilizumab compared to HIV-negative admitted to the ICU (aOR 6.1, 95% CI 1.5-24.5), even after adjusting for regional differences in early adoption of tocilizumab use. There was no difference in the number treated with steroids (aOR 0.9, 95% CI 0.2-3.1). Conclusion: This nation-wide cohort study, including the entire Swedish adult population hospitalized with COVID-19, indicates that PWH with well-treated HIV-infection have similar odds of severe COVID-19 as HIV-negative individuals. PWH admitted to the ICU were more likely treated with tocilizumab compared to HIV-negative.