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

Esha Kadam¹, Mahnoor Javaid², Parikshit Sen³, Sreoshy Saha⁴, Nelly Ziade^{5

6}, Jessica Day^{7

8

9}, Chris Wincup¹⁰, Laura Andreoli^{11

12}, Ioannis Parodis^{13

14}, Ai Lyn Tan^{15

16}, Samuel Katsuyuki Shinjo¹⁷, Dzifa Dey¹⁸, Lorenzo Cavagna¹⁹, Tulika Chatterjee²⁰, Johannes Knitza²¹, Guochun Wang²², Nicola Dalbeth²³, Tsvetelina Velikova²⁴, Simone Battista²⁵, Karen Cheng²⁶, Peter Boyd^{27

28}, Linda Kobert²⁹, Abraham Edgar Gracia-Ramos³⁰, Srijan Mittal³, Ashima Makol³¹, Carlos Enrique Toro Gutiérrez³², Carlo V Caballero Uribe³³, Masataka Kuwana³⁴, Gerd-Rüdiger Burmester³⁵, Francis Guillemin^{36

37}, Elena Nikiphorou^{38

39}, Hector Chinoy^{40

41

42}, Vikas Aggarwal⁴³, Latika Gupta^{44

45}; COVAD Study Group

Affiliations

¹ Seth Gordhandhas Sunderdas Medical College and King Edwards Memorial Hospital, Mumbai, Maharashtra, India.
² Medical College, Aga Khan University, Karachi, Pakistan.
³ Maulana Azad Medical College, 2-Bahadurshah Zafar Marg, New Delhi, Delhi, 110002, India.
⁴ Mymensingh Medical College, Mymensingh, Bangladesh.
⁵ Rheumatology Department, Saint-Joseph University, Beirut, Lebanon.
⁶ Rheumatology Department, Hotel-Dieu de France Hospital, Beirut, Lebanon.
⁷ Department of Rheumatology, Royal Melbourne Hospital, Parkville, VIC, 3050, Australia.
⁸ Walter and Eliza Hall Institute of Medical Research, Parkville, VIC, 3052, Australia.
⁹ Department of Medical Biology, University of Melbourne, Parkville, VIC, 3052, Australia.
¹⁰ Department of Rheumatology, King's College Hospital, London, UK.
¹¹ Rheumatology and Clinical Immunology Unit, ASST Spedali Civili and University of Brescia, 25123, Brescia, Italy.
¹² Department of Clinical and Experimental Sciences, University of Brescia, 25123, Brescia, Italy.
¹³ Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden.
¹⁴ Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
¹⁵ NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust, Leeds, UK.
¹⁶ Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
¹⁷ Division of Rheumatology, Faculdade de Medicina FMUSP, Universidade de São Paulo, São Paulo, SP, Brazil.
¹⁸ Department of Medicine and Therapeutics, School of Medicine and Dentistry, University of Ghana, College of Health Sciences, Korle-Bu, Accra, Ghana.
¹⁹ Rheumatology Unit, Dipartimento di Medicine Interna e Terapia Medica, Università degli Studi di Pavia, Pavia, Lombardy, Italy.
²⁰ Department of Internal Medicine, University of Illinois College of Medicine at Peoria, Peoria, IL, USA.
²¹ Medizinische Klinik 3, Rheumatologie Und Immunologie, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Ulmenweg 18, 91054, Erlangen, Deutschland.
²² Department of Rheumatology, China-Japan Friendship Hospital, Yinghua East Road, Chaoyang District, Beijing, 100029, China.
²³ Department of Medicine, University of Auckland, Auckland, New Zealand.
²⁴ Medical Faculty, Sofia University, St. Kliment Ohridski, 1 Kozyak Str., 1407, Sofia, Bulgaria.
²⁵ Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, Campus of Savona, University of Genova, Savona, Italy.
²⁶ Patient Research Partner/Volunteer, Myositis Support and Understanding, Lincoln, USA.
²⁷ Services Support Officer, Arthritis Ireland, Dublin, Ireland.
²⁸ Chair, EULAR PARE Committee, Kilchberg, Switzerland.
²⁹ Research and Communications Specialist, The Myositis Association, Lincoln, USA.
³⁰ 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. 02990, Mexico City, Mexico.
³¹ Division of Rheumatology, Mayo Clinic, Rochester, MN, USA.
³² Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontificia Universidad Javeriana Cali, Columbia, USA.
³³ Department of Medicine, Hospital Universidad del Norte, Barranquilla, Atlantico, Colombia.
³⁴ Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, 1-1-5 Sendagi, Bunkyo-Ku, Tokyo, 113-8602, Japan.
³⁵ Department of Rheumatology and Clinical Immunology, Charité, University Medicine Berlin, Free University and Humboldt University Berlin, Berlin, Germany.
³⁶ EA 4360 Apemac, Université de Lorraine, Nancy, France.
³⁷ Inserm, CHRU Nancy, CIC-1433 Epidémiologie Clinique, Université de Lorraine, Nancy, France.
³⁸ Centre for Rheumatic Diseases, King's College London, London, UK.
³⁹ Rheumatology Department, King's College Hospital, London, UK.
⁴⁰ Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK.
⁴¹ National Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, The University of Manchester, Manchester, UK.
⁴² Department of Rheumatology, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Salford, UK.
⁴³ Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
⁴⁴ Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK. drlatikagupta@gmail.com.
⁴⁵ Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, UK. drlatikagupta@gmail.com.

PMID: 38609655
PMCID: PMC11178609
DOI: 10.1007/s00296-024-05562-z

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

Esha Kadam et al. Rheumatol Int. 2024 Jul.

. 2024 Jul;44(7):1233-1244.

doi: 10.1007/s00296-024-05562-z. Epub 2024 Apr 12.

Authors

Affiliations

¹ Seth Gordhandhas Sunderdas Medical College and King Edwards Memorial Hospital, Mumbai, Maharashtra, India.
² Medical College, Aga Khan University, Karachi, Pakistan.
³ Maulana Azad Medical College, 2-Bahadurshah Zafar Marg, New Delhi, Delhi, 110002, India.
⁴ Mymensingh Medical College, Mymensingh, Bangladesh.
⁵ Rheumatology Department, Saint-Joseph University, Beirut, Lebanon.
⁶ Rheumatology Department, Hotel-Dieu de France Hospital, Beirut, Lebanon.
⁷ Department of Rheumatology, Royal Melbourne Hospital, Parkville, VIC, 3050, Australia.
⁸ Walter and Eliza Hall Institute of Medical Research, Parkville, VIC, 3052, Australia.
⁹ Department of Medical Biology, University of Melbourne, Parkville, VIC, 3052, Australia.
¹⁰ Department of Rheumatology, King's College Hospital, London, UK.
¹¹ Rheumatology and Clinical Immunology Unit, ASST Spedali Civili and University of Brescia, 25123, Brescia, Italy.
¹² Department of Clinical and Experimental Sciences, University of Brescia, 25123, Brescia, Italy.
¹³ Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden.
¹⁴ Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
¹⁵ NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust, Leeds, UK.
¹⁶ Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
¹⁷ Division of Rheumatology, Faculdade de Medicina FMUSP, Universidade de São Paulo, São Paulo, SP, Brazil.
¹⁸ Department of Medicine and Therapeutics, School of Medicine and Dentistry, University of Ghana, College of Health Sciences, Korle-Bu, Accra, Ghana.
¹⁹ Rheumatology Unit, Dipartimento di Medicine Interna e Terapia Medica, Università degli Studi di Pavia, Pavia, Lombardy, Italy.
²⁰ Department of Internal Medicine, University of Illinois College of Medicine at Peoria, Peoria, IL, USA.
²¹ Medizinische Klinik 3, Rheumatologie Und Immunologie, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Ulmenweg 18, 91054, Erlangen, Deutschland.
²² Department of Rheumatology, China-Japan Friendship Hospital, Yinghua East Road, Chaoyang District, Beijing, 100029, China.
²³ Department of Medicine, University of Auckland, Auckland, New Zealand.
²⁴ Medical Faculty, Sofia University, St. Kliment Ohridski, 1 Kozyak Str., 1407, Sofia, Bulgaria.
²⁵ Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, Campus of Savona, University of Genova, Savona, Italy.
²⁶ Patient Research Partner/Volunteer, Myositis Support and Understanding, Lincoln, USA.
²⁷ Services Support Officer, Arthritis Ireland, Dublin, Ireland.
²⁸ Chair, EULAR PARE Committee, Kilchberg, Switzerland.
²⁹ Research and Communications Specialist, The Myositis Association, Lincoln, USA.
³⁰ 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. 02990, Mexico City, Mexico.
³¹ Division of Rheumatology, Mayo Clinic, Rochester, MN, USA.
³² Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontificia Universidad Javeriana Cali, Columbia, USA.
³³ Department of Medicine, Hospital Universidad del Norte, Barranquilla, Atlantico, Colombia.
³⁴ Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, 1-1-5 Sendagi, Bunkyo-Ku, Tokyo, 113-8602, Japan.
³⁵ Department of Rheumatology and Clinical Immunology, Charité, University Medicine Berlin, Free University and Humboldt University Berlin, Berlin, Germany.
³⁶ EA 4360 Apemac, Université de Lorraine, Nancy, France.
³⁷ Inserm, CHRU Nancy, CIC-1433 Epidémiologie Clinique, Université de Lorraine, Nancy, France.
³⁸ Centre for Rheumatic Diseases, King's College London, London, UK.
³⁹ Rheumatology Department, King's College Hospital, London, UK.
⁴⁰ Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK.
⁴¹ National Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, The University of Manchester, Manchester, UK.
⁴² Department of Rheumatology, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Salford, UK.
⁴³ Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
⁴⁴ Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK. drlatikagupta@gmail.com.
⁴⁵ Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, UK. drlatikagupta@gmail.com.

PMID: 38609655
PMCID: PMC11178609
DOI: 10.1007/s00296-024-05562-z

Erratum in

Correction to: 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, Caballero-Uribe CV, Kuwana M, Burmester GR, Guillemin F, Nikiphorou E, Chinoy H; COVAD Study group; Agarwal V, Gupta L. Kadam E, et al. Rheumatol Int. 2024 Dec;44(12):3157-3162. doi: 10.1007/s00296-024-05692-4. Epub 2024 Oct 14. Rheumatol Int. 2024. PMID: 39400562 Free PMC article. No abstract available.

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.

Keywords: Autoimmune diseases; COVAD; Digital health; Quality of life; Sociodemographic factors; Survey.

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Conflict of interest statement

ALT has received honoraria for advisory boards and speaking for Abbvie, Gilead, Janssen, Lilly, Novartis, Pfizer, and UCB. EN has received speaker honoraria/participated in advisory boards for Celltrion, Pfizer, Sanofi, Gilead, Galapagos, AbbVie, and Lilly, and holds research grants from Pfizer and Lilly. HC has received consulting fees as a speaker for GSK, UCB; Advisory Board member for Astra Zeneca, Pfizer, Argenx, Galapagos; Data and Science Monitoring Board chair for Horizon Therapeutics. IP has received research funding and/or honoraria from Amgen, AstraZeneca, Aurinia Pharmaceuticals, Elli Lilly and Company, Gilead Sciences, GlaxoSmithKline, Janssen Pharmaceuticals, Novartis and F. Hoffmann-La Roche AG. JD has received research funding from CSL Limited. KC is the lead at the European Patient Advocacy Group (ePAG) and a patient with myositis. LK works at The Myositis Association which receives support from Octapharma, Mallinckrodt, Pfizer, argenx, Alexion, Janssen, Abcuro, Priovant, Horizon, and EMD Serono. MK has received speaker honoraria/participated in advisory boards for Asahi-Kasei, AstraZeneca, Boehringer-Ingelheim, Chugai, isai, GSK, Kissei, BML, Mochida, Nippon Shinyaku, Ono Pharmaceuticals, and Tanabe-Mitsubishi. ND has received consulting fees, speaker fees or grants from AstraZeneca, Novartis, Horizon, Selecta, Arthrosi, JW Pharmaceutical Corporation, PK Med, LG Chem, JPI, PTC Therapeutics, Protalix, Unlocked Labs, Hikma, Dexoligo Therapeutics. NZ has received speaker fees, advisory board fees, and research grants from Pfizer, Roche, Abbvie, Eli Lilly, NewBridge, Sanofi-Aventis, Boehringer Ingelheim, Janssen, and Pierre Fabre; none are related to this manuscript. TV has received speaker honoraria from Pfizer and AstraZeneca, non-related to the current manuscript. The rest of the authors have no conflict of interest relevant to this manuscript.

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

Affiliations

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

Authors

Affiliations

Erratum in

Abstract

Conflict of interest statement

References

MeSH terms

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Medical