Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies.
Journal: Rheumatology international
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Affiliated Institutions:
Seth Gordhandhas Sunderdas Medical College and King Edwards Memorial Hospital, Mumbai, Maharashtra, India.
Medical College, Aga Khan University, Karachi, Pakistan.
Maulana Azad Medical College, -Bahadurshah Zafar Marg, New Delhi, Delhi, , India.
Mymensingh Medical College, Mymensingh, Bangladesh.
Rheumatology Department, Saint-Joseph University, Beirut, Lebanon.
Department of Rheumatology, Royal Melbourne Hospital, Parkville, VIC, , Australia.
Department of Rheumatology, King's College Hospital, London, UK.
Rheumatology and Clinical Immunology Unit, ASST Spedali Civili and University of Brescia, , Brescia, Italy.
Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden.
NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust, Leeds, UK.
Division of Rheumatology, Faculdade de Medicina FMUSP, Universidade de São Paulo, São Paulo, SP, Brazil.
Department of Medicine and Therapeutics, School of Medicine and Dentistry, University of Ghana, College of Health Sciences, Korle-Bu, Accra, Ghana.
Rheumatology Unit, Dipartimento di Medicine Interna e Terapia Medica, Università degli Studi di Pavia, Pavia, Lombardy, Italy.
Department of Internal Medicine, University of Illinois College of Medicine at Peoria, Peoria, IL, USA.
Medizinische Klinik , Rheumatologie Und Immunologie, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Ulmenweg , , Erlangen, Deutschland.
Department of Rheumatology, China-Japan Friendship Hospital, Yinghua East Road, Chaoyang District, Beijing, , China.
Department of Medicine, University of Auckland, Auckland, New Zealand.
Medical Faculty, Sofia University, St. Kliment Ohridski, Kozyak Str., , Sofia, Bulgaria.
Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, Campus of Savona, University of Genova, Savona, Italy.
Patient Research Partner/Volunteer, Myositis Support and Understanding, Lincoln, USA.
Services Support Officer, Arthritis Ireland, Dublin, Ireland.
Research and Communications Specialist, The Myositis Association, Lincoln, USA.
Department of Internal Medicine, National Medical Center "La Raza", Instituto Mexicano del Seguro Social, General Hospital, Av. Jacaranda S/N, Col. La Raza, Del. Azcapotzalco, C.P. , Mexico City, Mexico.
Division of Rheumatology, Mayo Clinic, Rochester, MN, USA.
Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontificia Universidad Javeriana Cali, Columbia, USA.
Department of Medicine, Hospital Universidad del Norte, Barranquilla, Atlantico, Colombia.
Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, -- Sendagi, Bunkyo-Ku, Tokyo, -, Japan.
Department of Rheumatology and Clinical Immunology, Charité, University Medicine Berlin, Free University and Humboldt University Berlin, Berlin, Germany.
EA Apemac, Université de Lorraine, Nancy, France.
Centre for Rheumatic Diseases, King's College London, London, UK.
Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK.
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK. drlatikagupta@gmail.com.
Abstract summary
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.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.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 & Co-authors:
Kadam Esha E
Javaid Mahnoor M
Sen Parikshit P
Saha Sreoshy S
Ziade Nelly N
Day Jessica J
Wincup Chris C
Andreoli Laura L
Parodis Ioannis I
Tan Ai Lyn AL
Shinjo Samuel Katsuyuki SK
Dey Dzifa D
Cavagna Lorenzo L
Chatterjee Tulika T
Knitza Johannes J
Wang Guochun G
Dalbeth Nicola N
Velikova Tsvetelina T
Battista Simone S
Cheng Karen K
Boyd Peter P
Kobert Linda L
Gracia-Ramos Abraham Edgar AE
Mittal Srijan S
Makol Ashima A
Gutiérrez Carlos Enrique Toro CET
Uribe Carlo V Caballero CVC
Kuwana Masataka M
Burmester Gerd-Rüdiger GR
Guillemin Francis F
Nikiphorou Elena E
Chinoy Hector H
Aggarwal Vikas V
Gupta Latika L
Study Outcome
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