Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies

E Kadam, M Javaid, P Sen, S Saha, N Ziade… - Rheumatology …, 2024 - Springer
Introduction The growing recognition of holistic patient care highlights the various factors
shaping the quality of life of individuals with autoimmune and rheumatic diseases (AIRDs) …

Selecting patient-reported outcome measures of health-related quality of life in adult rheumatology: quality and breadth of coverage

E Knight, KE Schifferdecker, GS Eakin… - Rheumatology …, 2023 - Springer
Patient-centered research should assess outcomes important to patients and include patient-
reported outcome measures (PROMs) to assess health-related quality of life (HRQOL) …

Listening to patients, for the patients: The COVAD Study—Vision, organizational structure, and challenges

M Joshi, N Darooka, S Saha, S Dyball… - International Journal …, 2024 - Wiley Online Library
Background The pandemic presented unique challenges for individuals with autoimmune
and rheumatic diseases (AIRDs) due to their underlying condition, the effects of …

Living well with multiple autoimmune diseases: An interpretive description

E Cey - 2013 - harvest.usask.ca
Autoimmune diseases (ADs) are a classification of chronic of illnesses in which the immune
system mistakes healthy cells for foreign invaders and attacks the body's own tissues or …

POS0333 DETERMINANTS OF RESIDUAL PAIN IN PATIENTS WITH AUTOIMMUNE RHEUMATIC DISEASES IN REMISSION: A LATENT CLASS ANALYSIS FROM …

I Hmamouchi, N Ziade, B Salameh, M Moussallem… - 2024 - ard.bmj.com
Background: Pain plays an essential role in therapeutic decision-making in autoimmune
rheumatic diseases (AIRDs). However, it may persist in patients in disease remission, thus …

OMERACT quality-adjusted life-years (QALY) working group: do current QALY measures capture what matters to patients?

L Trenaman, A Boonen, F Guillemin… - The Journal of …, 2017 - jrheum.org
Objective. To understand the limitations with current patient-reported outcome measures
(PROM) used to generate quality-adjusted life-years (QALY) in rheumatology, and set a …

Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS

KE Schifferdecker, RL Butcher, E Knight… - ACR open …, 2020 - Wiley Online Library
Objective Patient‐reported outcome measures (PROMs) are increasingly used in clinical
settings but may not provide benefits to patients outside of health encounters. The Arthritis …

POS0182 SELF-MONITORING PRACTICES AND USE OF SELF-MONITORING TECHNOLOGIES IN PEOPLE WITH RHEUMATIC AND MUSCULOSKELETAL …

P Studenic, P Matias, S Rêgo, F Nunes, R Araújo… - 2024 - ard.bmj.com
Background: Rheumatic and Musculoskeletal Diseases (RMDs) impact a population
exceeding 120 million individuals within Europe and necessitate regular medical follow-up …

Measuring what matters: a qualitative study of the relevance and clinical utility of PROMIS surveys in systemic lupus erythematosus

S Kasturi, EL Ahearn, A Batterman, R Horton… - The Journal of …, 2024 - jrheum.org
Objective To evaluate the relevance and clinical utility of the Patient-Reported Outcomes
Measurement Information System (PROMIS) surveys in patients with systemic lupus …

Using big data from real-world Australian rheumatology encounters to enhance clinical care and research.

GO Littlejohn, KE Tymms, T Smith… - Clinical and …, 2019 - europepmc.org
OBJECTIVES: OPAL (Optimising Patient outcomes in Australian rheumatoLogy)
Rheumatology is an independent not for profit Australian clinical research organisation …