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

Esha Kadam, Mahnoor Javaid, Parikshit Sen, Sreoshy Saha, Nelly Ziade, Jessica Day, Chris Wincup, Laura Andreoli, Ioannis Parodis, Ai lyn Tan, Samuel katsuyuki Shinjo, Dzifa Dey, Lorenzo Cavagna, Tulika Chatterjee, Johannes Knitza, Guochun Wang, Nicola Dalbeth, Tsvetelina Velikova, Simone Battista, Karen ChengPeter Boyd, Linda Kobert, Abraham edgar Gracia-Ramos, Srijan Mittal, Ashima Makol, Carlos enrique toro Gutiérrez, Carlo v caballero Uribe, Masataka Kuwana, Gerd-Rüdiger Burmester, Francis Guillemin, Elena Nikiphorou, Hector Chinoy, Vikas Aggarwal, Latika Gupta

Research output: Contribution to journalArticlepeer-review

Abstract

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). Beyond the traditional disease measures, there is an emerging acknowledgment of the less-explored aspects, including subjective well-being, social determinants of health, comorbidities, mental health, and medication adherence. Moreover, digital health services have empowered patients to engage actively in decision-making alongside clinicians. To explore these domains within the context of AIRDs, the “Collating the Voice of People with Autoimmune Diseases” COVAD survey was conceived, a successor of the previous two COVAD surveys. In this document, we present the study protocol in comprehensive detail.

Methods
The COVAD-3 survey is a cross-sectional patient self-reported e-survey incorporating multiple widely accepted scales/scores to assess various aspects of patients’ lifestyles objectively. To ensure the survey's accuracy and usability across diverse regions, it will be translated into multiple languages and subjected to rigorous vetting and pilot testing. It will be distributed by collaborators via online platforms and data will be collected from patients with AIRDs, and healthy individuals over eight months. Data analysis will focus on outcome measures related to various social, demographic, economic, and psychological factors.

Conclusion
With the increasing awareness to adopt a holistic treatment approach encompassing all avenues of life, the COVAD-3 survey aims to gain valuable insights into the impact of social, demographic, economic, and psychological determinants of health on the subjective well-being in patients with AIRDs, which will contribute to a better understanding of their overall health and well-being.
Original languageEnglish
Pages (from-to)1233-1244
Number of pages12
JournalRheumatology international
Volume44
Issue number7
DOIs
Publication statusPublished - 12 Apr 2024

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