Correction : Rheumatology International (2024) 44:1233–1244 10.1007/s00296-024-05562-z
In the article by Kadam et al., the following corrections have been made:
The name of one co-author has been corrected to "Carlo V. Caballero-Uribe", which was previously incorrectly written as "Carlo V Caballero Uribe".
The affiliations of three co-authors have been corrected as following:
Karen Cheng—Associate Board Member, International Myositis Society, Göttingen, Germany; Patient Advisor, MIHRA Foundation, New Orleans, USA; Patient Research Partner, Myositis Support and Understanding, Lincoln, USA
Linda Kobert—Research and Communications Specialist, The Myositis Association, Columbia, MD, USA
Carlos Enrique Toro-Gutiérrez—Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontificia Universidad Javeriana Cali, Colombia
The "Survey Design" section have been updated:
"The survey questionnaire for the COVAD-3 study consists of a total of 141 questions and will approximately take 15 min to fill out the survey. The 141 questions are further subdivided into 13 specific subsections, several of which are optional….."
Reference number 16 has been updated.
Four new references have been added the "Current Disease Activity" section:
"The Patient Global Disease Activity Assessment and Patient Global Damage Assessment scales (Table 1) have been widely used to determine the disease status in arthritis patients." [37].
Table 1.
Description | Scale | No. of items | Domain/Theme | Scaling |
---|---|---|---|---|
Number of comorbidities | Functional Comorbidity Index [22] | 18 | Rheumatic/orthopedic comorbid, Cardiovascular comorbid, Respiratory comorbid, Neurological comorbid, Endocrine comorbid, Gastrointestinal comorbid, Psychiatric comorbid, Visual/auditory comorbid | Multiple responses |
Subjective well-being | Satisfaction With Life Scale (SWLS) [23] | 5 | N.A | 7-point Likert scale (1–7) |
Current health status | PROMIS GLOBAL Health-10 [14] | 10 | Physical health, Mental health, Social health | Semantic differential scale (1–5) |
Fatigue | Visual Analogue Scale (VAS) [39] | 1 | N.A | Semantic differential scale (0–10) |
Pain | Visual Analogue Scale (VAS) [42] | 1 | N.A | Semantic differential scale (0–10) |
Physical function | PROMIS PF-4a [14] | 4 | N.A | Semantic differential scale (1–5) |
Self-Efficacy | Self-Efficacy for Managing Chronic Disease Scale [24,25] | 6 |
Symptom control, Role function, Emotional functioning, Communicating with clinicians |
Semantic differential scale (1–10) |
Disease activity | Patient Global Disease Activity scale [37,38] | 1 | Effect of autoimmune/rheumatic disease on patient | Semantic differential scale (0–10) |
Damage Assessment | Patient Global Damage Assessment Scale [37,38] | 1 | Damage caused by autoimmune/rheumatic disease on the patient's body | Semantic differential scale (0–10 |
Trust in health insurance | Patient trust in a health insurer scale [30] | 5 | N.A | 5-point Likert scale (1–5) |
Family functionality | Family APGAR scale [27] | 5 | Adaptation, partnership, growth, affection, and resolve | Semantic differential scale (0–3) |
Job satisfaction | Short Index of Job Satisfaction [28] | 6 | N.A | 5-point Likert scale (1–5) |
Loneliness | UCLA 3-Item Loneliness Scale [26] | 3 | Companionship and isolation | Semantic differential scale (1–3) |
Resilience | Brief Resilience Scale [40] | 6 | N.A | 5-point Likert scale (1–5) |
Sexual Well-being | Short Sexual Well-being Scale (SSWBS) [31] | 5 | Frequency, sexual distress, physical sexual satisfaction, emotional sexual satisfaction, and sexuality in the social sphere | 7-point Likert scale (1–7) |
Diet | Mediterranean Diet Adherence Screener (MEDAS) questionnaire [32] | 14 | N.A |
1. Yes/no question 2. Multiple choice questions |
Knowledge of, attitudes toward, and use of health-related information | Health Information National Trends Survey (HINTS 6) [29] | 14 | Looking for health information, using the Internet to find information, your healthcare, telehealth, medical records, caregiving, genetic testing, overall health, environment and health, social determinants of health, health and nutrition, physical activity and exercise, tobacco products, and you and your household | Multiple mixed scale type |
Ankylosing Spondylitis activity |
Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) [18] |
6 | Fatigue/tiredness, pain, discomfort and morning stiffness | Semantic differential scale (0–10) |
Psoriatic arthritis disease activity | The EULAR Psoriatic Arthritis Impact of Disease: PsAID12 for Clinical Practice [20] | 12 | Pain, fatigue, skin problems, work and/or leisure activity, functional capacity, discomfort, sleep disturbance, coping, anxiety, fear and uncertainty, embarrassment and/or shame, social participation, and depression | Semantic differential scale (0–10) |
Sjogren syndrome disease activity |
EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI) [19] |
3 | Dryness, limb pain, and fatigue | Semantic differential scale (0–10) |
Functional scale for myasthenia gravis | Myasthenia Gravis Activities of Daily Living [41] | 8 | Talking, chewing, swallowing, breathing, brushing teeth or hair, arising from chair, double vision, and eyelid drooping | Multiple mixed scale type |
"These scales will be used to record the current disease activity based on the involvement of specific organs, including the joints and skin." [38].
"Fatigue will similarly be measured through the self-reported visual analogue scale for fatigue (VAS-F), where 'not at all fatigued' will be scored 0 and 'extremely fatigued' will be scored 10." [39].
The Visual Analogue Scale (VAS) (Table 1) is a single-item scale that will be used to determine the severity of pain in patients with the answers ranging from ‘no pain’ (scored 0) to ‘worst possible pain’ (scored 10). [42].
-
4.
The "Methods" section has been updated:
-
•
In "Medication and Adherence" subsection, this sentence has been added for clarification: "A question aims to assess how well the respondents follow their prescribed treatment plan, as medication adherence can affect outcomes in autoimmune diseases." Previous sentences have been discarded.
-
•
Reference 21 has been omitted.
-
5.
One new reference has been added in the "Mental Health" section to clarify the resilience scale:
"A higher score reflects greater resilience in managing stress." [40].
-
6.
A revised version of Table 1 and the COVAD 3 survey (Supplementary material) are now available.
-
7.
The declaration of one of the co-author has been updated:
“KC is a patient living with myositis and serves on the board of International Myositis Society, patient advisory group of the MIHRA foundation and EU patient advocacy for MSU”.
The identified errors do not invalidate the study's overall methodology. The authors apologize for any inconvenience caused and appreciate the opportunity to correct the record.
New References to be updated.
16. Fazal, Z.Z., Sen, P., Joshi, M. et al. COVAD survey 2 long-term outcomes: unmet need and protocol. Rheumatol Int 42, 2151–2158 (2022). 10.1007/s00296-022-05157-6.
37. Nikiphorou E, Radner H, Chatzidionysiou K, Desthieux C, Zabalan C, van Eijk-Hustings Y, Dixon WG, Hyrich KL, Askling J, Gossec L. Patient global assessment in measuring disease activity in rheumatoid arthritis: a review of the literature. Arthritis Res Ther. 2016 Oct 28;18(1):251. 10.1186/s13075-016-1151-6. PMID: 27,793,211; PMCID: PMC5086038.
38. Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976–83.
39. Lee KA, Hicks G, Nino-Murcia G. Validity and reliability of a scale to assess fatigue. Psychiatry Res. 1991 Mar;36(3):291–8. 10.1016/0165-1781(91)90027-m. PMID: 2,062,970.
40: Smith BW, Dalen J, Wiggins K, Tooley E, Christopher P, Bernard J. The brief resilience scale: assessing the ability to bounce back. Int J Behav Med. 2008;15(3):194–200. 10.1080/10705500802222972. PMID: 18,696,313.
41: Wolfe GI, Herbelin L, Nations SP, Foster B, Bryan WW, Barohn RJ. Myasthenia gravis activities of daily living profile. Neurology. 1999 Apr 22;52(7):1487–9. 10.1212/wnl.52.7.1487. PMID: 10,227,640.
42. Couper M, Tourangeau R, Conrad F, et al.: Evaluating the effectiveness of visual analog scales: A web experiment. Soc Sci Comput Rev 2006;24:227–245.
Supplementary Information
Below is the link to the electronic supplementary material.
Acknowledgements
The authors are thankful to our patient research partners and the TMA for their valuable feedback on survey design. COVAD study group authors Chafia Dahou Makhloufi, Leandro Gabriel Ferreyra Garrott, Valentina Vardanyan, Vidya Sadanand Limaye, Nilesh Srivastav, A.T.M. Tanveer Hasan, Marharyta Volkava, Sonam Yangchen, Dimitri Luz Felipe da Silva, Odirlei Andre Monticielo, Russka Shumnalieva, Rositsa Svetoslavova Dacheva, Koy Rattanak, Fernando Kemta Lekpa, Océane Landon-Cardinal, Vanessa Ocampo, María Francisca Bozán Pérez, Antonia Valenzuela, Ho So, Iris Tang, Edmund KM Wong, Sebastian Herrera Uribe, Ivan Padjen, Zeljka Kardum, Konstantinos Parperis, Karen Schreiber, Jossiell Then Báez, Reem Hamdy Abdellatif Mohammed, Hala Mohamed Lotfy, Walaa Abdel Rahman Saleh, Mer-vat Eissa, Tamer A. Gheita, Carlos Rios, Sandra Meisalu (Previously Talli), Becky Abdissa Adugna, Margherita Giannini, Julien Campagne, Alain Meyer, Hannah Labinsky, Alexandros Panagiotopoulos, Andrea Bran Ordóñez, Melinda Nagy-Vincze, Bhupen Barman, Yogesh Preet Singh, Arunkumar R Pande, Praggya Yaadav, Jasmine Parihar, Lakshmi M.R, Manali Sarkar, Suryo Anggoro Kusumo Wibowo, Maryam Masoumi, Avin Maroof, Asal Adnan Redha, Or Aharonov, Marta Mosca, Nicoletta Del Papa, Atzeni Fabiola, Marco Sebastiani, Franco Franceschini, Pier Paolo Sainaghi, Maria Giovanna Danielli, Vincenzo Venerito, Alessandro Giollo, Alessia Alluno, Devis Benfaremo, Valentino Paci, Giovanni Damiani, Elvis Hysa, Matteo Lucchini, Alberto Lo Gullo, Marco Fornaro, Akira Yoshida, Saori Abe, Ran Nakashima (Sasai), Fatima Alnaimat, Gulzhan Trimova, Dana Bekaryssova, Eugene kalman Genga, Soad Salem Hashad, Laila Ayoub, Syahrul Sazliyana Shaharir, Tan Chou Luan, Rosalie Magro, Erick Adrian Zamora Tehozol, Ignacio García-De La Torre, Iris J. Colunga-Pedraza, Javier Merayo-Chalico, Deshire Alpizar-Rodriguez, Miguel Angel Saavedra Salinas, Victoria Sadovici-Bobeica, Zulgerel Dandii, Ihsane Hmamouchi, Binit Vaidya, Luis Fernando Perez Garcia, Idania Calixta Escalante Mendoza, Christian Mauriel Uriarte Hernandez, Moussa Elh Ibrahim Fanata, Uyiekpen Ima-Edomwonyi, Ibukunoluwa Dedeke, Airenakho Emorinken, Henry Madu Nwankwo, Hakeem Babatunde Olaosebikan, Celestine Okwara, Tralagba Uchechukwu, Batool Hassan, Uzma Rasheed, Babur Salim, Nelly Colman Mc Leod, Manuel Francisco Ugarte-Gil, Victor Pimentel-Quiroz, Lisa S Traboco, Joanna Makowska, Aleksandra Opinc-Rosiak, Marcin Milchert, Luís Sousa Inês, Samar Al Emadi, Cristina Alexandru, Anca Bobircă, Claudia Cobilinschi, Margarita Aleksandrovna Gromova, Mubirigi Alexandre, Lina El Kibbe, Hussein Mohammed Halabi, Rada Miskovic, Anindita Santosa, Desmond Chua, Cristiana Sieiro Santos, Jesús Loarce-Martos, Sergio Prieto-González, Juan Molina-Collada, Chathurika Lakmini Dandeniya, Ahmed Seri Ibrahim Mohamed, Raphael Micheroli Lisa Christ, Oliver Distler, Nada Alchama, Yi-Ming Chen, Chih-Wei Tseng, Phonpen Akarawatcharangura, Wanruchada Katchamart, Wafa Hamdi, Döndü Üsküdar Cansu, Reşit Yıldırım, Tugba Izci Duran, Neslihan Gokcen, Myroslava Kulyk, Nesreen Mohamed Ismail Moustafa, John D Pauling, Tania Gudu, Valentina Pucino, Melanie Sloan, Sarah Dyball, James Lilleker, Aurelie Najm, Arvind Nune, Aarat Patel, Shikha Singla, Mazen Dimachkie, Yurilís Fuentes-Silva, Bich Ngoc Nguyen, Panganani Njobvu, Hugo Alonzo, Carlos Benito Santiago Pastelin, Generoso Guerra Bautista, Enrique Julio Giraldo Ho, Paula Jordan, Kirtida Oza, Ingrid De Groot.
Author Contribution
Conceptualization: LG, VA. Funding acquisition: N/A. Methodology: LG, VA, Steering committee: Authors part of the Steering Committee: LG, VA, HC, EN, IP, ALT, SS, NZ, TV, AEGR, MK, JK, AM, CETG, CVCU, DD, JD, LA, CW, FG, ND, GRB, GW. Validation: LG, VA. Supervision: LG, VA. Writing-original draft: LG, EK. Writing-review and editing: LG, VA, MJ, EK, and PS. Software: N/A. Formal analysis: N/A. Investigation: N/A. Resources: N/A. Data curation: N/A. Visualization: N/A.
Funding
No specific funding was received from any funding bodies in the public, commercial or not-for-profit sectors to carry out the work described in this manuscript. HC is supported by the National Institution for Health Research Manchester Biomedical Research Centre (NIHR203308). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Data Availability
The datasets generated and/or analyzed during the current study are not publicly available but are available from the corresponding author upon reasonable request.
Declarations
Conflicts of Interest
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 a patient living with myositis and serves on the board of International Myositis Society, patient advisory group of the MIHRA foundation and EU patient advocacy for MSU. 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.
Ethical approval
The ethical approval has been obtained from the Institutional Ethics Committee at the SGPGIMS, Raebareli Road, Lucknow, India, postal code 226014.
Disclaimer
No part of this manuscript has been copied or published elsewhere, either in whole or in part.
Footnotes
Publisher's Note
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Contributor Information
Latika Gupta, Email: drlatikagupta@gmail.com.
the COVAD Study group:
Chafia Dahou Makhloufi, Leandro Gabriel Ferreyra Garrott, Valentina Vardanyan, Vidya Sadanand Limaye, Nilesh Srivastav, A. T. M. Tanveer Hasan, Marharyta Volkava, Sonam Yangchen, Dimitri Luz Felipe da Silva, Odirlei Andre Monticielo, Russka Shumnalieva, Rositsa Svetoslavova Dacheva, Koy Rattanak, Fernando Kemta Lekpa, Océane Landon-Cardinal, Vanessa Ocampo, María Francisca Bozán Pérez, Antonia Valenzuela, Ho So, Iris Tang, Edmund K. M. Wong, Sebastian Herrera Uribe, Ivan Padjen, Zeljka Kardum, Konstantinos Parperis, Karen Schreiber, Jossiell Then Báez, Reem Hamdy Abdellatif Mohammed, Hala Mohamed Lotfy, Walaa Abdel Rahman Saleh, Mer-vat Eissa, Tamer A. Gheita, Carlos Rios, Sandra Meisalu, Becky Abdissa Adugna, Margherita Giannini, Julien Campagne, Alain Meyer, Hannah Labinsky, Alexandros Panagiotopoulos, Andrea Bran Ordóñez, Melinda Nagy-Vincze, Bhupen Barman, Yogesh Preet Singh, Arunkumar R. Pande, Praggya Yaadav, Jasmine Parihar, Lakshmi M.R, Manali Sarkar, Suryo Anggoro Kusumo Wibowo, Maryam Masoumi, Avin Maroof, Asal Adnan Redha, Or Aharonov, Marta Mosca, Nicoletta Del Papa, Atzeni Fabiola, Marco Sebastiani, Franco Franceschini, Pier Paolo Sainaghi, Maria Giovanna Danielli, Vincenzo Venerito, Alessandro Giollo, Alessia Alluno, Devis Benfaremo, Valentino Paci, Giovanni Damiani, Elvis Hysa, Matteo Lucchini, Alberto Lo Gullo, Marco Fornaro, Akira Yoshida, Saori Abe, Ran Nakashima, Fatima Alnaimat, Gulzhan Trimova, Dana Bekaryssova, Eugene kalman Genga, Soad Salem Hashad, Laila Ayoub, Syahrul Sazliyana Shaharir, Tan Chou Luan, Rosalie Magro, Erick Adrian Zamora Tehozol, Ignacio García-De La Torre, Iris J. Colunga-Pedraza, Javier Merayo-Chalico, Deshire Alpizar-Rodriguez, Miguel Angel Saavedra Salinas, Victoria Sadovici-Bobeica, Zulgerel Dandii, Ihsane Hmamouchi, Binit Vaidya, Luis Fernando Perez Garcia, Idania Calixta Escalante Mendoza, Christian Mauriel Uriarte Hernandez, Moussa Elh Ibrahim Fanata, Uyiekpen Ima-Edomwonyi, Ibukunoluwa Dedeke, Airenakho Emorinken, Henry Madu Nwankwo, Hakeem Babatunde Olaosebikan, Celestine Okwara, Tralagba Uchechukwu, Batool Hassan, Uzma Rasheed, Babur Salim, Nelly Colman Mc Leod, Manuel Francisco Ugarte-Gil, Victor Pimentel-Quiroz, Lisa S. Traboco, Joanna Makowska, Aleksandra Opinc-Rosiak, Marcin Milchert, Luís Sousa Inês, Samar Al Emadi, Cristina Alexandru, Anca Bobircă, Claudia Cobilinschi, Margarita Aleksandrovna Gromova, Mubirigi Alexandre, Lina El Kibbe, Hussein Mohammed Halabi, Rada Miskovic, Anindita Santosa, Desmond Chua, Cristiana Sieiro Santos, Jesús Loarce-Martos, Sergio Prieto-González, Juan Molina-Collada, Chathurika Lakmini Dandeniya, Ahmed Seri Ibrahim Mohamed, Raphael Micheroli Lisa Christ, Oliver Distler, Nada Alchama, Yi-Ming Chen, Chih-Wei Tseng, Phonpen Akarawatcharangura, Wanruchada Katchamart, Wafa Hamdi, Döndü Üsküdar Cansu, Reşit Yıldırım, Tugba Izci Duran, Neslihan Gokcen, Myroslava Kulyk, Nesreen Mohamed Ismail Moustafa, John D. Pauling, Tania Gudu, Valentina Pucino, Melanie Sloan, Sarah Dyball, James Lilleker, Aurelie Najm, Arvind Nune, Aarat Patel, Shikha Singla, Mazen Dimachkie, Yurilís Fuentes-Silva, Bich Ngoc Nguyen, Panganani Njobvu, Hugo Alonzo, Carlos Benito Santiago Pastelin, Generoso Guerra Bautista, Enrique Julio Giraldo Ho, Paula Jordan, Kirtida Oza, and Ingrid De Groot
Reference
- 1.Kadam, E., Javaid, M., Sen, P., Saha, S., Ziade, N., Day, J., Wincup, C., Andreoli, L., Parodis, I., Tan, A. L., Shinjo, S. K., Dey, D., Cavagna, L., Chatterjee, T., Knitza, J., Wang, G., Dalbeth, N., Velikova, T., Battista, S., … Gupta, L. (2024). Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies. Rheumatology International. 10.1007/s00296-024-05562-z [DOI] [PMC free article] [PubMed]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The datasets generated and/or analyzed during the current study are not publicly available but are available from the corresponding author upon reasonable request.