Addressing the Human Experience of Chronic Kidney Disease: A Call to Transform Kidney Care.

Chronic kidney disease (CKD), a long-term condition in which kidney function declines over time, is a growing global healthcare concern. CKD can have a major impact on the quality of life of patients and their caregivers. Recent research by the International Society of Nephrology highlights that current treatment strategies and policies do not fully address patients' needs.

International Map of Axial Spondyloarthritis (IMAS): results from the perspective of 5557 patients from 27 countries around the globe.

Background: The International Map of Axial Spondyloarthritis (IMAS) is a global initiative aimed to assess the impact and burden of axial spondyloarthritis (axSpA) and identify the unmet needs from the patient's perspective.

Method: IMAS is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville, Novartis Pharma AG and steered by a scientific committee. IMAS collected information through an online cross-sectional survey (2017-2022) from unselected patients with axSpA from Europe, Asia, North America, Latin America and Africa who completed a comprehensive questionnaire containing over 120 items.

Poor health and functioning in patients with axial spondyloarthritis during the COVID-19 pandemic and lockdown: REUMAVID study (phase 1).

Aim: To evaluate the overall health and functioning in patients with axial spondyloarthritis (axSpA) and related factors affecting these during the COVID-19 pandemic and lockdown measures.

Methods: Data from 587 axSpA patients participating in the first phase (April-July 2020) of the REUMAVID study who completed the ASAS Health Index (ASAS-HI) were analysed. REUMAVID is a cross-sectional study that collects data through an online survey to assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases across seven European countries.

Impact of COVID-19 containment measures on patients with rheumatic and musculoskeletal disease in the UK and Europe: the REUMAVID study (phase1).

Objectives: The aim was to compare the impact of the first wave of the coronavirus disease 2019 (COVID-19) pandemic and lockdown measures on patients with rheumatic and musculoskeletal diseases (RMDs) in the UK and other European countries (OEC).

Methods: REUMAVID was an online cross-sectional survey of seven European countries. The data collected included the following: demographics, lifestyle, employment, access to health-care services, disease-specific characteristics, the World Health Organization five well-being index (WHO-5), hospital anxiety and depression scale (HADS), visual analogue scale (VAS) disease activity, and the perceived acceptable symptom scale.

Impact of axial spondyloarthritis on mental health in Europe: results from the EMAS study.

Objective: To determine the presence of mental disorder risk and associated factors in European patients with axial spondyloarthritis (axSpA).

Methods: Data from 2,166 patients with axSpA in 12 European countries were collected from 2017 to 2018 through the European Map of Axial Spondyloarthritis online survey. Risk of mental disorders was assessed using the 12-item General Health Questionnaire.

A Benchmarking Study Evaluating Axial Spondyloarthritis Burden in Spain and Other European Countries. Results from the Spanish Atlas and the European Map of Axial Spondyloarthritis (EMAS) Studies.

Aim: To compare the burden of disease in Spanish patients with axial spondyloarthritis (axSpA) vs other European countries (OEC).

Methods: Data from 2846 unselected patients from the European Map of Axial Spondyloarthritis (EMAS) and the Atlas of Axial Spondyloarthritis in Spain (Atlas) were collected through online surveys. Comparative analysis was carried out between Spanish patients (2016) and patients from 12 OEC ( 2017-2018).

Identifying parameters associated with delayed diagnosis in axial spondyloarthritis: data from the European map of axial spondyloarthritis.

Objective: To identify the parameters associated with self-reported diagnostic delay (DD) in axial spondyloarthritis (axSpA) patients across Europe.

Methods: Data from 2652 patients from 13 countries who participated in the European Map of Axial Spondyloarthritis (EMAS) were collected through an online survey (2017-2018). DD was calculated as the difference between age at diagnosis and age at symptom onset reported by participants.

Assessment of impact of the COVID-19 pandemic from the perspective of patients with rheumatic and musculoskeletal diseases in Europe: results from the REUMAVID study (phase 1).

Aim: To assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases (RMDs).

Methods: REUMAVID is a cross-sectional study using an online survey developed by an international multidisciplinary patient-led collaboration across seven European countries targeting unselected patients with RMDs. Healthcare access, daily activities, disease activity and function, well-being (WHO Five Well-Being Index (WHO-5)), health status, anxiety/depression (Hospital Anxiety and Depression Scale (HADS)) and access to information were evaluated.

Gender differences in patient journey to diagnosis and disease outcomes: results from the European Map of Axial Spondyloarthritis (EMAS).

Introduction/objectives: To evaluate the journey to diagnosis, disease characteristics and burden of disease in male and female patients with axial spondyloarthritis (axSpA) across Europe.

Method: Data from 2846 unselected patients participating in the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017-2018) across 13 countries were analysed. Sociodemographic characteristics, lifestyle, diagnosis, disease characteristics and patient-reported outcomes (PROs) [disease activity -BASDAI (0-10), spinal stiffness (3-12), functional limitations (0-54) and psychological distress (GHQ-12)] were compared between males and females using chi-square (for categorical variables) and student t (for continuous variables) tests.

Patient-Reported Impact of Axial Spondyloarthritis on Working Life: Results From the European Map of Axial Spondyloarthritis Survey.

Objective: To evaluate work-related issues (WRIs) and their determinants in patients with axial spondyloarthritis (SpA) across Europe.

Methods: The European Map of Axial Spondyloarthritis is a cross-sectional online survey (2017-2018) of unselected patients with self-reported axial SpA from 13 European countries. Participants were classified as active or inactive members of the labor force according to the International Labor Organization standards.

The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries.

Purpose Of Review: Scientific research in axial spondyloarthritis (axSpA) has grown significantly. Nevertheless, the patient perspective remains insufficiently explored. Using a cross-sectional survey, the European Map of Axial Spondyloarthritis (EMAS) describes how patients living with self-reported axSpA experience their disease physically, psychologically, and socially.