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

Autoimmune diseases COVAD Digital health Quality of life Sociodemographic factors Survey

Journal

Rheumatology international
ISSN: 1437-160X
Titre abrégé: Rheumatol Int
Pays: Germany
ID NLM: 8206885

Informations de publication

Date de publication:
12 Apr 2024
Historique:
received: 13 11 2023
accepted: 21 02 2024
medline: 13 4 2024
pubmed: 13 4 2024
entrez: 12 4 2024
Statut: aheadofprint

Résumé

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.

Identifiants

pubmed: 38609655
doi: 10.1007/s00296-024-05562-z
pii: 10.1007/s00296-024-05562-z
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

© 2024. The Author(s).

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Auteurs

Esha Kadam (E)

Seth Gordhandhas Sunderdas Medical College and King Edwards Memorial Hospital, Mumbai, Maharashtra, India.

Mahnoor Javaid (M)

Medical College, Aga Khan University, Karachi, Pakistan.

Parikshit Sen (P)

Maulana Azad Medical College, 2-Bahadurshah Zafar Marg, New Delhi, Delhi, 110002, India.

Sreoshy Saha (S)

Mymensingh Medical College, Mymensingh, Bangladesh.

Nelly Ziade (N)

Rheumatology Department, Saint-Joseph University, Beirut, Lebanon.
Rheumatology Department, Hotel-Dieu de France Hospital, Beirut, Lebanon.

Jessica Day (J)

Department of Rheumatology, Royal Melbourne Hospital, Parkville, VIC, 3050, Australia.
Walter and Eliza Hall Institute of Medical Research, Parkville, VIC, 3052, Australia.
Department of Medical Biology, University of Melbourne, Parkville, VIC, 3052, Australia.

Chris Wincup (C)

Department of Rheumatology, King's College Hospital, London, UK.

Laura Andreoli (L)

Rheumatology and Clinical Immunology Unit, ASST Spedali Civili and University of Brescia, 25123, Brescia, Italy.
Department of Clinical and Experimental Sciences, University of Brescia, 25123, Brescia, Italy.

Ioannis Parodis (I)

Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden.
Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.

Ai Lyn Tan (AL)

NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust, Leeds, UK.
Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.

Samuel Katsuyuki Shinjo (SK)

Division of Rheumatology, Faculdade de Medicina FMUSP, Universidade de São Paulo, São Paulo, SP, Brazil.

Dzifa Dey (D)

Department of Medicine and Therapeutics, School of Medicine and Dentistry, University of Ghana, College of Health Sciences, Korle-Bu, Accra, Ghana.

Lorenzo Cavagna (L)

Rheumatology Unit, Dipartimento di Medicine Interna e Terapia Medica, Università degli Studi di Pavia, Pavia, Lombardy, Italy.

Tulika Chatterjee (T)

Department of Internal Medicine, University of Illinois College of Medicine at Peoria, Peoria, IL, USA.

Johannes Knitza (J)

Medizinische Klinik 3, Rheumatologie Und Immunologie, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Ulmenweg 18, 91054, Erlangen, Deutschland.

Guochun Wang (G)

Department of Rheumatology, China-Japan Friendship Hospital, Yinghua East Road, Chaoyang District, Beijing, 100029, China.

Nicola Dalbeth (N)

Department of Medicine, University of Auckland, Auckland, New Zealand.

Tsvetelina Velikova (T)

Medical Faculty, Sofia University, St. Kliment Ohridski, 1 Kozyak Str., 1407, Sofia, Bulgaria.

Simone Battista (S)

Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, Campus of Savona, University of Genova, Savona, Italy.

Karen Cheng (K)

Patient Research Partner/Volunteer, Myositis Support and Understanding, Lincoln, USA.

Peter Boyd (P)

Services Support Officer, Arthritis Ireland, Dublin, Ireland.
Chair, EULAR PARE Committee, Kilchberg, Switzerland.

Linda Kobert (L)

Research and Communications Specialist, The Myositis Association, Lincoln, USA.

Abraham Edgar Gracia-Ramos (AE)

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.

Srijan Mittal (S)

Maulana Azad Medical College, 2-Bahadurshah Zafar Marg, New Delhi, Delhi, 110002, India.

Ashima Makol (A)

Division of Rheumatology, Mayo Clinic, Rochester, MN, USA.

Carlos Enrique Toro Gutiérrez (CET)

Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontificia Universidad Javeriana Cali, Columbia, USA.

Carlo V Caballero Uribe (CVC)

Department of Medicine, Hospital Universidad del Norte, Barranquilla, Atlantico, Colombia.

Masataka Kuwana (M)

Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, 1-1-5 Sendagi, Bunkyo-Ku, Tokyo, 113-8602, Japan.

Gerd-Rüdiger Burmester (GR)

Department of Rheumatology and Clinical Immunology, Charité, University Medicine Berlin, Free University and Humboldt University Berlin, Berlin, Germany.

Francis Guillemin (F)

EA 4360 Apemac, Université de Lorraine, Nancy, France.
Inserm, CHRU Nancy, CIC-1433 Epidémiologie Clinique, Université de Lorraine, Nancy, France.

Elena Nikiphorou (E)

Centre for Rheumatic Diseases, King's College London, London, UK.
Rheumatology Department, King's College Hospital, London, UK.

Hector Chinoy (H)

Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK.
National Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, The University of Manchester, Manchester, UK.
Department of Rheumatology, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Salford, UK.

Vikas Aggarwal (V)

Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.

Latika Gupta (L)

Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, Manchester, UK. drlatikagupta@gmail.com.
Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, UK. drlatikagupta@gmail.com.

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