TY - JOUR
T1 - Correction to
T2 - Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies (Rheumatology International, (2024), 44, 7, (1233-1244), 10.1007/s00296-024-05562-z)
AU - on behalf of the COVAD Study group
AU - Kadam, Esha
AU - Javaid, Mahnoor
AU - Sen, Parikshit
AU - Saha, Sreoshy
AU - Ziade, Nelly
AU - Day, Jessica
AU - Wincup, Chris
AU - Andreoli, Laura
AU - Parodis, Ioannis
AU - Tan, Ai Lyn
AU - Shinjo, Samuel Katsuyuki
AU - Dey, Dzifa
AU - Cavagna, Lorenzo
AU - Chatterjee, Tulika
AU - Knitza, Johannes
AU - Wang, Guochun
AU - Dalbeth, Nicola
AU - Velikova, Tsvetelina
AU - Battista, Simone
AU - Cheng, Karen
AU - Boyd, Peter
AU - Kobert, Linda
AU - Gracia-Ramos, Abraham Edgar
AU - Mittal, Srijan
AU - Makol, Ashima
AU - Gutiérrez, Carlos Enrique Toro
AU - Caballero-Uribe, Carlo V.
AU - Kuwana, Masataka
AU - Burmester, Gerd Rüdiger
AU - Guillemin, Francis
AU - Nikiphorou, Elena
AU - Chinoy, Hector
AU - De Groot, Ingrid
AU - Oza, Kirtida
AU - Jordan, Paula
AU - Ho, Enrique Julio Giraldo
AU - Bautista, Generoso Guerra
AU - Pastelin, Carlos Benito Santiago
AU - Alonzo, Hugo
AU - Njobvu, Panganani
AU - Nguyen, Bich Ngoc
AU - Fuentes-Silva, Yurilís
AU - Dimachkie, Mazen
AU - Singla, Shikha
AU - Patel, Aarat
AU - Nune, Arvind
AU - Najm, Aurelie
AU - Lilleker, James
AU - Dyball, Sarah
AU - Sloan, Melanie
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/12
Y1 - 2024/12
N2 - 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 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 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 presented.) Scales included in the COVAD-3 survey 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]. 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. One new reference has been added in the "Mental Health" section to clarify the resilience scale: 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. 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]. A revised version of Table 1 and the COVAD 3 survey (Supplementary material) are now available. The declaration of one of the co-author has been updated: A revised version of Table 1 and the COVAD 3 survey (Supplementary material) are now available. 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. 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). https://doi.org/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. https://doi.org/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. https://doi.org/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. https://doi.org/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. https://doi.org/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.
AB - 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 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 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 presented.) Scales included in the COVAD-3 survey 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]. 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. One new reference has been added in the "Mental Health" section to clarify the resilience scale: 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. 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]. A revised version of Table 1 and the COVAD 3 survey (Supplementary material) are now available. The declaration of one of the co-author has been updated: A revised version of Table 1 and the COVAD 3 survey (Supplementary material) are now available. 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. 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). https://doi.org/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. https://doi.org/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. https://doi.org/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. https://doi.org/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. https://doi.org/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.
KW - Autoimmune diseases
KW - Correction
KW - Digital health
KW - Quality of life
KW - Sociodemographic factors
KW - Survey
UR - https://www.scopus.com/pages/publications/85206851559
U2 - 10.1007/s00296-024-05692-4
DO - 10.1007/s00296-024-05692-4
M3 - Comment/debate
C2 - 39400562
AN - SCOPUS:85206851559
SN - 0172-8172
VL - 44
SP - 3157
EP - 3162
JO - Rheumatology International
JF - Rheumatology International
IS - 12
ER -