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

Kadam E, Javaid M, Sen P, Saha S, Ziade N, Day J, Wincup C, Andreoli L, Parodis I, Tan AL, Shinjo SK, Dey D, Cavagna L, Chatterjee T, Knitza J, Wang G, Dalbeth N, Velikova T, Battista S, Cheng K, Boyd P, Kobert L, Gracia-Ramos AE, Mittal S, Makol A, Gutiérrez CET, Uribe CV, Kuwana M, Burmester GR, Guillemin F, Nikiphorou E, Chinoy H, Aggarwal V, Gupta L (2024)

Publication Type: Journal article

Publication year: 2024

Journal

DOI: 10.1007/s00296-024-05562-z

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.

Authors with CRIS profile

Involved external institutions

Pontifical Xavierian University / Pontificia Universidad Javeriana Colombia (CO) APEMAC Laboratory / Adaptation, mesure et évaluation en santé. Approches interdisciplinaires France (FR) King Edward Memorial Hospital and Seth G.S. Medical College / கிங் எட்வர்ட் நினைவு மருத்துவமனை,राजा एड्वर्ड स्मारक रुग्णालय व सेठ गोवर्धनदास सुंदरदास वैद्यकीय महाविद्यालय India (IN) Aga Khan University (AKU) / آغا خان یونیورسٹی‎ Pakistan (PK) Maulana Azad Medical College (MAMC) India (IN) Karolinska University Hospital / Karolinska Universitetssjukhuset Sweden (SE) NIHR Leeds Musculoskeletal Biomedical Research Unit (LMBRU) United Kingdom (GB) University of São Paulo / Universidade de São Paulo (USP) Brazil (BR) University of Ghana Ghana (GH) Università degli Studi di Pavia Italy (IT) University of Illinois at Chicago United States (USA) (US) China-Japan Friendship Hospital China (CN) University of Auckland New Zealand (NZ) Mymensingh Medical College / ময়মনসিংহ মেডিকেল কলেজ Bangladesh (BD) Université Saint-Joseph (USJ) / جامعة القديس يوسف / Սուրբ Ժոզեֆի համալսարան Lebanon (LB) Royal Melbourne Hospital (RMH) Australia (AU) King's College Hospital (KCH) United Kingdom (GB) Università degli Studi di Brescia Italy (IT) Sofia University "St. Kliment Ohridski" / Софийски университет "Св. Климент Охридски" Bulgaria (BG) University of Genova / Università degli Studi di Genova Italy (IT) Arthritis Ireland Ireland (IE) The Myositis Association United States (USA) (US) Instituto Mexicano del Seguro Social Mexico (MX) Mayo Clinic United States (USA) (US) Universidad del Norte Colombia (CO) Charité - Universitätsmedizin Berlin Germany (DE) King’s College London United Kingdom (GB) University of Manchester United Kingdom (GB) Sanjay Gandhi Post Graduate Institute of Medical Sciences (SGPGIMS) India (IN)

How to cite

APA:

Kadam, E., Javaid, M., Sen, P., Saha, S., Ziade, N., Day, J.,... Gupta, L. (2024). Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies. Rheumatology International. https://doi.org/10.1007/s00296-024-05562-z

MLA:

Kadam, Esha, et al. "Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies." Rheumatology International (2024).

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