Nationwide, large-scale implementation of an online system for remote entry of patient-reported outcomes in rheumatology: characteristics of users and non-users and time to first entry.

Aims: In May 2020, a nationwide, web-based system for remote entry of patient-reported outcomes (PROs) in inflammatory rheumatic diseases was launched and implemented in routine care (DANBIO-from-home). After 1.5 years of use, we explored clinical characteristics of patients who did versus did not use the system, and the time to first entry of PROs.

Participatory research: a Priority Setting Partnership for chronic musculoskeletal pain in Denmark.

Objectives: Patient and stakeholder engagements in research have increasingly gained attention in healthcare and healthcare-related research. A common and rigorous approach to establish research priorities based on input from people and stakeholders is the James Lind Alliance Priority Setting Partnership (JLA-PSP). The aim of this study was to establish research priorities for chronic musculoskeletal (MSK) pain by engaging with people living with chronic MSK pain, relatives to people living with chronic MSK pain, healthcare professionals (HCP), and researchers working with chronic MSK pain.

Long-term Behavioral Changes During the COVID-19 Pandemic and Impact of Vaccination in Patients With Inflammatory Rheumatic Diseases.

Objective: To explore anxiety and self-isolation in patients with inflammatory rheumatic disease (IRD)15 months into the coronavirus disease 2019 (COVID-19) pandemic, including attitudes toward and effects of SARS-CoV-2 vaccination.

Methods: A nationwide online survey was conducted at 3 timepoints: May 2020, November 2020, and May 2021. Patients with IRD followed in the Danish Rheumatology Quality Registry (DANBIO) were asked about the effects of the pandemic, including SARS-CoV-2 infection and their behavior, anxiety, and concerns.

Impact of the COVID-19 pandemic on treat-to-target strategies and physical consultations in >7000 patients with inflammatory arthritis.

Objectives: To explore the impact of the COVID-19 pandemic on treat-to-target strategies (disease activity, remission rates) and access to physical consultations in patients with inflammatory rheumatic disease, as well as to explore characteristics of patients with/without physical consultations in the clinic and the impact of early vs established disease.

Methods: Patients with RA, PsA or axial SpA (axSpA) prospectively followed in the nationwide DANBIO registry answered online questionnaires and reported patient-reported outcomes (PROs) in June and November 2020. Patient characteristics, disease activity and physical consultations in the clinic before and during the pandemic were identified in DANBIO [all patients and subgroups with early disease (disease duration ≤2 years)].

Establishing research priorities related to osteoarthritis care via stakeholder input from patients.

Introduction: Stakeholder involvement in research is emphasised to improve relevance. We aimed to identify, define and prioritise important research topics seen from the point of view of people with osteoarthritis (OA).

Methods: We invited 1,315 members of the user panel of the Danish Rheumatism Association to answer an electronic survey that included; 1) an open-ended question about important research topics (free-text response option), 2) 15 predefined research topics to be rated for importance and 3) predefined topics grouped into four categories in which the most important was prioritised.

Self-protection strategies and health behaviour in patients with inflammatory rheumatic diseases during the COVID-19 pandemic: results and predictors in more than 12 000 patients with inflammatory rheumatic diseases followed in the Danish DANBIO registry.

Aims: In Danish patients with inflammatory rheumatic diseases to explore self-protection strategies and health behaviour including adherence to disease-modifying antirheumatic treatment (DMARD) during the initial phase of the COVID-19 pandemic and again after the reopening of the society started. Furthermore, to identify characteristics of patients with high levels of anxiety and self-isolation.

Methods: Patients in routine care followed prospectively in the nationwide DANBIO registry were invited to answer an online questionnaire regarding disease activity and COVID-19 infection, behaviour in March and June 2020.

Patients' Views on Routine Collection of Patient-Reported Outcomes in Rheumatology Outpatient Care: A Multicenter Focus Group Study.

Objective: To explore the patients' views of the collection and use of patient-reported outcomes as part of routine care in patients with inflammatory arthritis.

Methods: We conducted a qualitative focus group study based on interviews in each of the 5 geographical regions of Denmark. The analysis was based on content analysis.

How to develop patient-centered research: some perspectives based on surveys among people with rheumatic diseases in Scandinavia.

Patient-centered research addresses the research agenda of patients and captures aspects of health and functioning that they consider important. Yet, those who live with a disease or condition have limited influence when it comes to setting the research agenda, and we know little about how they experience being participants in research studies. Furthermore, knowledge is limited concerning factors enhancing or hindering patients' participation in trials and the format that people with rheumatic diseases and their families prefer for dissemination of the results from clinical research.