The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

Dougherty, Dane H; Kwakkenbos, Linda; Carrier, Marie‐Eve; Salazar, Gloria A.; Assassi, Shervin; Baron, Murray; Bartlett, Susan J.; Fürst, Daniel E.; Gottesman, Karen; Hoogen, Frank van den; Malcarne, Vanessa L.; Mouthon, Luc; Nielson, Warren R.; Poiraudeau, Serge; Sauvé, Maureen; Boire, Gilles; Bruns, Alessandra; Chung, Lorinda; Denton, Christopher P.; Dunne, James V.; Fortin, Paul R; Frech, Tracy; Gill, Amarjit; Gordon, Jessica; Herrick, Ariane L.; Hinchcliff, Monique; Hudson, Marie; Johnson, Sindhu R.; Jones, Niall; Kafaja, Suzanne; Larché, Maggie; Manning, Joanne; Pope, Janet; Spiera, Robert; Steen, Virginia D.; Sutton, Evelyn; Thorne, Carter; Wilcox, Pearce; Thombs, Brett D.; Mayes, Maureen D.; Albert, Alexandra; Arsenault, Guylaine; Bissonette, Lyne; Boutron, Isabelle; Carreira, Patrícia; Maia, Ângela; Dagenais, Pierre; Domsic, Robyn T.; El‐Baalbaki, Ghassan; Ells, Carolyn; Ende, Cornelia van den; Fligelstone, Kim; Fortune, Catherine; Godard, D.; Gyger, Geneviève; Harel, Daphna; Ikic, Alena; Impens, Ann; Jang, Yeona; De, Bergsagel; Kennedy, Ann Tyrell; Khalidi, Nader; Korman, Benjamin; Leite, Catarina; Liang, Patrick; Marra, Carlo; Masetto, Ariel; Nielsen, Karen; Portales, Alexandra; Riggs, Robert J.; Reyna, Tatiana Sofía Rodríguez; Roux, Sophie; Schouffoer, Anne A.; Steele, Russell; Suarez‐Almazor, María E.; Varga, John; Welling, Joep; Wigley, Fredrick M.; Wong‐Rieger, Durhane; Cumin, Julie; Delisle, Vanessa C.; Fedoruk, Claire; Fox, Rina S.; Gholizadeh, Shadi; Jewett, Lisa R.; Levis, Brooke; Mills, Sarah D.; Pépin, Mia; Persmann, Jennifer; Turner, Kimberly A.

doi:10.1093/rheumatology/key139

Cited by 61 publications

(56 citation statements)

References 18 publications

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“…First, we used convenience samples to develop the questions and evaluate the measurement properties of the COVID-19 Fears Questionnaire. The demographic (including gender, ethnicity, and country) and medical characteristics of SPIN-COVID-19 Cohort participants are similar, though, to our ongoing SPIN Cohort, which is comparable with other large international SSc cohorts [ 13 ]. Second, this study only included patients with SSc, and item development did not include participants with other chronic medical conditions.…”

Section: Discussionsupporting

confidence: 65%

“…We solicited a list of fears during the COVID-19 outbreak from people living with the rare, chronic, autoimmune disease systemic sclerosis (SSc; scleroderma). People with SSc are representative of other groups of patients who are vulnerable due to a pre-existing medical condition; they are at risk of severe complications if infected due to lung involvement [ 12 , 13 ], general frailty [ 12 ], and the use of immunosuppressant drugs [ 14 ]. We used suggestions from 121 people with SSc and content analysis to develop a preliminary 15-item version of a fear measure for people with chronic medical conditions [ 15 ].…”

Section: Introductionmentioning

confidence: 99%

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Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study

Kwakkenbos

Henry

et al. 2020

Journal of Psychosomatic Research

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Objective Fear associated with medical vulnerability should be considered when assessing mental health among individuals with chronic medical conditions during the COVID-19 pandemic. The objective was to develop and validate the COVID-19 Fears Questionnaire for Chronic Medical Conditions. Methods Fifteen initial items were generated based on suggestions from 121 people with the chronic autoimmune disease systemic sclerosis (SSc; scleroderma). Patients in a COVID-19 SSc cohort completed items between April 9 and 27, 2020. Exploratory factor analysis (EFA) and item analysis were used to select items for inclusion. Cronbach's alpha and Pearson correlations were used to evaluate internal consistency reliability and convergent validity. Factor structure was confirmed with confirmatory factor analysis (CFA) in follow-up data collection two weeks later. Results 787 participants completed baseline measures; 563 of them completed the follow-up assessment. Ten of 15 initial items were included in the final questionnaire. EFA suggested that a single dimension explained the data reasonably well. There were no indications of floor or ceiling effects. Cronbach's alpha was 0.91. Correlations between the COVID-19 Fears Questionnaire and measures of anxiety ( r = 0.53), depressive symptoms ( r = 0.44), and perceived stress ( r = 0.50) supported construct validity. CFA supported the single-factor structure (χ 2 (35) = 311.2, p < 0.001, Tucker-Lewis Index = 0.97, Comparative Fit Index = 0.96, Root Mean Square Error of Approximation = 0.12). Conclusion The COVID-19 Fears Questionnaire for Chronic Medical Conditions can be used to assess fear among people at risk due to pre-existing medical conditions during the COVID-19 pandemic.

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Section: Discussionsupporting

confidence: 65%

Section: Introductionmentioning

confidence: 99%

Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study

Kwakkenbos

Henry

et al. 2020

Journal of Psychosomatic Research

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“…An overall prevalence of physician-reported SSc-ILD of 36.2% was recently reported by the Scleroderma Patient-Centered Intervention Network (SPIN) cohort. 7 A diagnosis of dcSSc was associated with a greater prevalence of ILD of 48.5% as compared with 27.7% in lcSSc. 7 Similar frequencies have been reported in older cohorts, ranging between 30 and 71% in dcSSc and 20.8 and 53% in lcSSc, [8][9][10][11][12][13] with the wide differences in prevalence related, at least in part, to differences in detection methods.…”

Section: Epidemiology Of Ssc-ildmentioning

confidence: 85%

Systemic Sclerosis Associated Interstitial Lung Disease: A Comprehensive Overview

Mackintosh

Stainer

Barnett

et al. 2019

Semin Respir Crit Care Med

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Interstitial lung disease (ILD) is a common complication of systemic sclerosis (SSc). SSc-ILD adversely impacts quality of life and is currently the leading cause of death in this multisystem disease. Identifying clinically significant SSc-ILD is critically important. Accurate staging and prognostication remain difficult; however, significant advances have been made in the last decade. Evidence supports the need to treat patients with extensive and/or progressive SSc-ILD, while only a subset of patients with limited ILD may require treatment. Research is urgently required to allow improved prediction of patients at risk of ILD progression at an early point in the disease, and ideally prior to its onset, to allow prevention. The last decade has seen the publication of landmark clinical trials for SSc-ILD. More effective strategies with less toxicity are under investigation. For those with refractory or very advanced disease, studies into disease-specific palliative approaches are in their infancy. Lung transplantation as an option for SSc-ILD remains patient- and center-specific, with data to suggest equivalent outcomes to other fibrotic lung diseases, in carefully selected cases. This review aims to provide a comprehensive overview of all key aspects of SSc-ILD.

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“…However, although the SPIN Cohort constitutes a convenience sample of SSc patients receiving treatment at a SPIN recruiting centre, and patients at these centres may differ from those in other settings, a comparison between SPIN Cohort participants and the European Scleroderma Trials and Research and Canadian Scleroderma Research Group cohorts showed broad comparability. 27 This increases confidence that insights gained from the SPIN Cohort should be generalisable.…”

Section: Discussionmentioning

confidence: 96%

Assessing differential item functioning for the Social Appearance Anxiety Scale: a Scleroderma atient-centred Intervention Network (SPIN) Cohort Study

et al. 2020

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ObjectivesThe Social Appearance Anxiety Scale (SAAS) is a 16-item questionnaire developed to evaluate fear of appearance-based evaluation by others. The primary objective of this research was to investigate the existence of differential item functioning (DIF) for the 16 SAAS items, comparing patients who completed the SAAS in English and French, either to confirm that scores are comparable or provide guidance on calculating comparable scores. A secondary research objective was to investigate the existence of DIF based on sex and disease status. A tertiary research objective was to assess DIF related to language, sex, and disease status on the recently developed SAAS-5.DesignThis was a cross-sectional analysis using baseline data from patients enrolled in the Scleroderma Patient-centred Intervention Network (SPIN).SettingSPIN patients included in the present study were enrolled at 43 centres in Canada, USA, UK, France and Australia, with questionnaires completed in April 2014 to July 2019.Participants1640 SPIN patients completed the SAAS in French (n=600) or English (n=1040).Primary and secondary measuresThe SAAS was collected along with demographic and disease characteristics.ResultsSix items were identified with statistically significant language-based DIF, four with sex-based DIF and one with disease type-based DIF. However, factor scores before and after accounting for DIF were similar (Pearson correlation >0.99), and individual score differences were small. This was true for both the full and shortened versions of the SAAS.ConclusionSAAS and SAAS-5 scores are comparable across language, sex, and disease-type, despite small differences in how patients respond to some items.

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The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

Cited by 61 publications

References 18 publications

Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study

Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study

Systemic Sclerosis Associated Interstitial Lung Disease: A Comprehensive Overview

Assessing differential item functioning for the Social Appearance Anxiety Scale: a Scleroderma atient-centred Intervention Network (SPIN) Cohort Study

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