Multiple Sclerosis International Federation

BackgroundThis study aims to assess the prevalence of poor mental health in axial spondyloarthritis (axSpA) and its associated factors in a large sample of patients from the International Map of Axial Spondyloarthritis (IMAS) study from around the globe.MethodsIMAS is a cross-sectional online survey (2017–2022) that includes 5557 unselected patients with axSpA worldwide. Mental health was evaluated by the 12-item General Health Questionnaire (GHQ-12) and the cut-off point for poor mental health was set at 3. Logistic regression analysis was used to evaluate relationships between the investigated factors and poor mental health (GHQ-12≥3) in patients with axSpA (n=4335).ResultsOf 5351 patients, the mean of GHQ-12 was 4.7 and 59.4% were having poor mental health, being 69.9% in South Africa, 63.7% in Latin America, 60.8% in Europe, 54.3% in North America and 51.8% in Asia. Overall, 40.5% and 37.2% of patients experienced anxiety and depression. The factors associated with poor mental health were younger age (OR=0.99), female gender (OR=1.16), being on sick leave or unemployed (OR=1.63), non-physical activity (OR=1.22), smoking (OR=1.20), higher Bath Ankylosing Spondylitis Disease Activity Index [BASDAI] (OR=1.42), functional limitation (OR=1.02) and shorter symptoms duration (OR=0.98).ConclusionsGlobally, 6 in 10 patients with axSpA had poor mental health, with a higher proportion in South Africa and lower in Asia. The factors associated with poor mental health include domains such as younger age, female gender, employment difficulties, harmful habits, disease burden and symptom duration. A holistic management approach to axSpA should encompass both physical and mental health.

BackgroundThe International Map of Axial Spondyloarthritis (IMAS) is a global assessment of the impact and burden of axial spondyloarthritis (axSpA) from the patient perspective, and identifying the unmet needs of axSpA patients through a survey. This research started in 2016 with the Atlas of Axial Spondyloarthritis in Spain, expanded in 2017-2018 to 13 European countries giving rise to the European Map of Axial Spondyloarthritis (EMAS) and further expanding worldwide across 27 countries to become the International Map of Axial Spondyloarthritis (IMAS).ObjectivesHere we present the scope of the study, distribution and main characteristics of patients included and instruments to collect data, as well as highlighting the impact of the disease.MethodsThis research is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville and Novartis Pharma AG together with a scientific committee composed of axSpA patient representatives, rheumatologists, psychologists, and researchers. IMAS collected information through an online cross-sectional survey (2017-2022) from unselected axSpA patients from Europe, Asia, North America, Latin America and Africa. The inclusion criteria were: age ≥ 18 years, residents in the specified country, a diagnosis of axSpA (self-reported AS/nr-axSpA) and under the care of an health care professional. Patients completed a comprehensive questionnaire containing over 120 items on socio-demographics, health behaviours, diagnosis and disease characteristics, comorbidities, mental health (General Health Questionnaire- GHQ-12), healthcare resource utilization, pharmacological treatments, disease activity (BASDAI), physical activity and functioning, employment, and disease related fears and hopes.Results5,557 axSpA patients participated in IMAS. The mean age was 43.9±12.8 years, 55.4% were women, 46.2% had university education and 48.5% were employed. 20.6% were on sick leave (temporary or permanent), 71.4% had difficulty finding job due to axSpA and 71.0% reported work-related issues. Patients’ diagnostic delay was a mean of 7.4±9.0 years (median: 4.0), and the mean disease duration was 17.1±13.3 years. 75.0% of patients had active disease and 59.4% were at risk of poor mental health. In addition, patients had a mean of 2 physical comorbidities. On average, patients had visited primary care physicians 4.6 times and the rheumatologist 3.6 times in the year prior to the survey. 78.6% had ever taken NSAIDs, 43.6% csDMARDs and 48.8% bDMARDs. The greatest fear of these patients was disease progression (55.9%), while the greatest hope was to be able to relief pain (54.2%).ConclusionIMAS is the largest survey in geographical reach and this is the first-time global results are presented. IMAS has shown the global profile of axSpA patients, highlighting unmet needs, including unacceptable delays in diagnosis, and high burden of the disease in axSpA patients worldwide. This global dataset will enable more detailed investigations to obtain evidence on the critical issues that matter to patients around the world in order to improve their care and quality of life.Map 1.Distribution of IMAS patients by region (N= 5,557)AcknowledgementsThis study was supported by Novartis Pharma AG. The authors would like to thank all patients who participated in the study.Disclosure of InterestsMarco Garrido-Cumbrera Grant/research support from: Novartis, Denis Poddubnyy Speakers bureau: AbbVie, BMS, Celgene, Janssen, Lilly, MSD, Novartis, Pfizer, Roche and UCB, Grant/research support from: AbbVie, MSD, Novartis, and Pfizer, Fernando Sommerfleck Speakers bureau: Abbvie, Eli Lilly, Janssen, Novartis, Consultant of: Abbvie, Novartis, Janssen, Christine Bundy Speakers bureau: AbbVie, Celgene, Janssen, Lilly, Novartis and Pfizer, Souzi Makri Consultant of: Novartis, GSK and Bayer, José Correa-Fernández: None declared, SHASHANK MURLIDHAR AKERKAR Speakers bureau: Pfizer, Novartis, Eli Lilly, Jansen, Jo Lowe Grant/research support from: No personal funding, but ASIF has received funding from Novartis, UCB, Lilly, Abbvie, Boehringer Ingleheim, Pfizer, Janssen, Elie Karam: None declared, Laura Christen Employee of: Novartis employment and stock ownership, Victoria Navarro-Compán Speakers bureau: AbbVie, Eli Lilly, Janssen, MSD, Novartis, Pfizer, UCB Pharma, Consultant of: AbbVie, Eli Lilly, Galapagos, MoonLake, MSD, Novartis, Pfizer, UCB Pharma, Grant/research support from: AbbVie, Novartis.

Disease registries can be extremely powerful evidence generating tools while providing a central meeting point for all implicated stakeholders, facilitating their networking and interaction. Registries can play a major role in addressing the challenges that the care of thalassemia patients is currently facing. By collecting updated and representative data on disease burden, features, management and outcomes at local, national, regional and global level, thalassemia registries can allow the evaluation and bench marking of provided healthcare services, the detection of unmet clinical needs and the identification of inequalities in healthcare delivery. A total of 17 thalassemia registries has been in place since 1984, being characterized by heterogeneity and incomplete geographic coverage. Representativeness, interoperability, harmonization, quality assurance and sustainability are important features that thalassemia registries should pursue. The Thalassaemia International Federation (TIF) aims at promoting the coordination and collaboration in existing thalassemia registries and the establishment of new ones, with a particular focus on areas of emerging economies. In this regard, TIF has undertaken the design, development and implementation of a web-based platform to host a global thalassemia registry.

AbstractaxSpA has a considerable impact on healthcare systems, both in terms of absolute monetary costs and healthcare resource utilization (Heijde et al. Ann Rheum Dis 76:978–991, 2017; Harvard S, Guh D, Bansback N, et al. Costs of early spondyloarthritis: estimates from the first 3 years of the DESIR cohort. RMD Open. 2016;2:e000230.).

Abstract In this chapter, the physical health of European IMAS participants is examined, including disease activity, spinal stiffness, inflammation, and comorbidities.

Background and ObjectivesPeople with multiple sclerosis (MS) are a vulnerable group for severe coronavirus disease 2019 (COVID-19), particularly those taking immunosuppressive disease-modifying therapies (DMTs). We examined the characteristics of COVID-19 severity in an international sample of people with MS.MethodsData from 12 data sources in 28 countries were aggregated (sources could include patients from 1–12 countries). Demographic (age, sex), clinical (MS phenotype, disability), and DMT (untreated, alemtuzumab, cladribine, dimethyl fumarate, glatiramer acetate, interferon, natalizumab, ocrelizumab, rituximab, siponimod, other DMTs) covariates were queried, along with COVID-19 severity outcomes, hospitalization, intensive care unit (ICU) admission, need for artificial ventilation, and death. Characteristics of outcomes were assessed in patients with suspected/confirmed COVID-19 using multilevel mixed-effects logistic regression adjusted for age, sex, MS phenotype, and Expanded Disability Status Scale (EDSS) score.ResultsSix hundred fifty-seven (28.1%) with suspected and 1,683 (61.9%) with confirmed COVID-19 were analyzed. Among suspected plus confirmed and confirmed-only COVID-19, 20.9% and 26.9% were hospitalized, 5.4% and 7.2% were admitted to ICU, 4.1% and 5.4% required artificial ventilation, and 3.2% and 3.9% died. Older age, progressive MS phenotype, and higher disability were associated with worse COVID-19 outcomes. Compared to dimethyl fumarate, ocrelizumab and rituximab were associated with hospitalization (adjusted odds ratio [aOR] 1.56, 95% confidence interval [CI] 1.01–2.41; aOR 2.43, 95% CI 1.48–4.02) and ICU admission (aOR 2.30, 95% CI 0.98–5.39; aOR 3.93, 95% CI 1.56–9.89), although only rituximab was associated with higher risk of artificial ventilation (aOR 4.00, 95% CI 1.54–10.39). Compared to pooled other DMTs, ocrelizumab and rituximab were associated with hospitalization (aOR 1.75, 95% CI 1.29–2.38; aOR 2.76, 95% CI 1.87–4.07) and ICU admission (aOR 2.55, 95% CI 1.49–4.36; aOR 4.32, 95% CI 2.27–8.23), but only rituximab was associated with artificial ventilation (aOR 6.15, 95% CI 3.09–12.27). Compared to natalizumab, ocrelizumab and rituximab were associated with hospitalization (aOR 1.86, 95% CI 1.13–3.07; aOR 2.88, 95% CI 1.68–4.92) and ICU admission (aOR 2.13, 95% CI 0.85–5.35; aOR 3.23, 95% CI 1.17–8.91), but only rituximab was associated with ventilation (aOR 5.52, 95% CI 1.71–17.84). Associations persisted on restriction to confirmed COVID-19 cases. No associations were observed between DMTs and death. Stratification by age, MS phenotype, and EDSS score found no indications that DMT associations with COVID-19 severity reflected differential DMT allocation by underlying COVID-19 severity.DiscussionUsing the largest cohort of people with MS and COVID-19 available, we demonstrated consistent associations of rituximab with increased risk of hospitalization, ICU admission, and need for artificial ventilation and of ocrelizumab with hospitalization and ICU admission. Despite the cross-sectional design of the study, the internal and external consistency of these results with prior studies suggests that rituximab/ocrelizumab use may be a risk factor for more severe COVID-19.

Coronavirus disease 2019 (COVID-19) has had and continues to have a significant medical, public health, social and economic impact on every society around the world. Some groups of chronic patients including thalassaemia and other haemoglobin disorders were considered from the beginning of the pandemic, as vulnerable and high risk ones with regards to a more severe clinical outcome of the infection with severe acute respiratory syndrome-coronavirus-2 (SARS-CoV-2). This is because patients with thalassaemia can present with many and multiple co-morbidities including diabetes, heart, liver, endocrine and other conditions mainly secondary to iron overload and consequent to ineffective or suboptimal medical care and/or adherence to chelation treatment in particular. Transfusion dependent patients with β-thalassaemia have been greatly affected across the world, including in Iran, a country geographically situated in the so called thalassaemia belt. Iran with about 20,000 patients with β-thalassaemia and quite successful disease specific prevention and management national programmes faced challenges similar to others. Blood shortages for example consequent to COVID-19 precaution measures taken in every country to contain the virus and the difficulties in accessing drugs including lifesaving ones (iron chelation medication) constitute major challenges. In Iran however, and despite the multiple difficulties as described above, SARS-CoV-2 had a rather small impact regarding infection rates as compared to the rest of the countries, albeit a higher mortality rate reaching 26.5% amongst COVID-19 diagnosed patients. More comprehensive data however from a bigger number of patients with thalassaemia across the world infected with SARS-CoV- 2 is necessary to draw any reliable conclusions as to the level of vulnerability to SARS-CoV-2 and importantly the clinical impact of this virus in these patients.