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3. MUC5B, telomere length and longitudinal quantitative interstitial lung changes: the MESA Lung Study

Author

Kim, John S, Manichaikul, Ani W, Hoffman, Eric A, Balte, Pallavi, Anderson, Michaela R, Bernstein, Elana J, Madahar, Purnema, Oelsner, Elizabeth C, Kawut, Steven M, Wysoczanski, Artur, Laine, Andrew F, Adegunsoye, Ayodeji, Z, Jennie, Taub, Margaret A, Mathias, Rasika A, Rich, Stephen S, Rotter, Jerome I, Noth, Imre, Garcia, Christine Kim, Barr, R Graham, and Podolanczuk, Anna J

Subjects
Biomedical and Clinical Sciences, Cardiovascular Medicine and Haematology, Clinical Sciences, Clinical Research, Atherosclerosis, Genetics, Lung, Good Health and Well Being, Adult, Humans, Lung Diseases, Interstitial, Genotype, Telomere, Mucin-5B, Imaging/CT MRI etc, Interstitial Fibrosis, Respiratory System, Cardiovascular medicine and haematology, Clinical sciences
Abstract

BackgroundThe MUC5B promoter variant (rs35705950) and telomere length are linked to pulmonary fibrosis and CT-based qualitative assessments of interstitial abnormalities, but their associations with longitudinal quantitative changes of the lung interstitium among community-dwelling adults are unknown.MethodsWe used data from participants in the Multi-Ethnic Study of Atherosclerosis with high-attenuation areas (HAAs, Examinations 1-6 (2000-2018)) and MUC5B genotype (n=4552) and telomere length (n=4488) assessments. HAA was defined as the per cent of imaged lung with attenuation of -600 to -250 Hounsfield units. We used linear mixed-effects models to examine associations of MUC5B risk allele (T) and telomere length with longitudinal changes in HAAs. Joint models were used to examine associations of longitudinal changes in HAAs with death and interstitial lung disease (ILD).ResultsThe MUC5B risk allele (T) was associated with an absolute change in HAAs of 2.60% (95% CI 0.36% to 4.86%) per 10 years overall. This association was stronger among those with a telomere length below an age-adjusted percentile of 5% (p value for interaction=0.008). A 1% increase in HAAs per year was associated with 7% increase in mortality risk (rate ratio (RR)=1.07, 95% CI 1.02 to 1.12) for overall death and 34% increase in ILD (RR=1.34, 95% CI 1.20 to 1.50). Longer baseline telomere length was cross-sectionally associated with less HAAs from baseline scans, but not with longitudinal changes in HAAs.ConclusionsLongitudinal increases in HAAs were associated with the MUC5B risk allele and a higher risk of death and ILD.

Published
2023

5. The association of outdoor temperature and self-reported Raynaud's phenomenon severity among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study

Author

Fortuné, Catherine, Adams, Claire E., Henry, Richard S., El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofía, Shouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Alric, Laurent, André, Marc, Beaslay, Floryan, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Blaise, Sophie, Bories, Eva, Bruns, Alessandra, Cacciatore, Carlotta, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Deltombe, Thylbert, Denton, Christopher, Desroche, Tannvir, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gauzère, Loraine, Gerber, Anne, Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Geneviève, Hachulla, Erica, Hoa, Sabrina, Hughes, Michael, Ikic, Alena, Khalidi, Nader, Lakin, Kimberly, Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin Lopez, Maria, Martin, Thierry, Masetto, Ariel, Mekinian, Arsène, Melchor Díaz, Sheila, Mourguet, Morgane, Nikpour, Mandana, Olgane, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Rodríguez Almazar, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Varga, John, Wilcox, Pearce, Cañedo Ayala, Mara, Cook, Vanessa, Dal Santo, Cassidy, Dal Santo, Tiffany, D'Onofrio, Monica, Hu, Sophie, Neyer, Marieke Alexandra, Provencher, Sabrina, Virgili-Gervais, Gabrielle, Matthews, Bianca, Nassar, Elsa-Lynn, Carrier, Marie-Eve, Kwakkenbos, Linda, Pauling, John D, Bartlett, Susan J, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Hudson, Marie, Hummers, Laura K, Lawrie-Jones, Amanda, Malcarne, Vanessa L, Mayes, Maureen D, Richard, Michelle, Sauvé, Maureen, Wojeck, Robyn K, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D

Published
2024
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7. Expert consensus on the management of systemic sclerosis-associated interstitial lung disease

Author

Rahaghi, Franck F., Hsu, Vivien M., Kaner, Robert J., Mayes, Maureen D., Rosas, Ivan O., Saggar, Rajan, Steen, Virginia D., Strek, Mary E., Bernstein, Elana J., Bhatt, Nitin, Castelino, Flavia V., Chung, Lorinda, Domsic, Robyn T., Flaherty, Kevin R., Gupta, Nishant, Kahaleh, Bashar, Martinez, Fernando J., Morrow, Lee E., Moua, Teng, Patel, Nina, Shlobin, Oksana A., Southern, Brian D., Volkmann, Elizabeth R., and Khanna, Dinesh

Published
2023
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9. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Author

Adams, Claire E., Henry, Richard S., Fortuné, Catherine, Gottesman, Karen, Guillot, Geneviève, Hummers, Laura K., Lawrie-Jones, Amanda, Mayes, Maureen D., Richard, Michelle, Sauvé, Maureen, Assassi, Shervin, El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Gietzen, Amy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, André, Marc, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Ikic, Alena, Kafaja, Suzanne, Khalidi, Nader, Lakin, Kimberly, Lambert, Marc, Launay, David, Lee, Yvonne C., Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Lopez, Maria Martin, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Díaz, Sheila Melchor, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Almazar, Esther Rodríguez, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa-Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Wojeck, Robyn K., Knisely, Mitchell R., Bailey, Donald E., Somers, Tamara J., Kwakkenbos, Linda, Carrier, Marie-Eve, Nielson, Warren R., Bartlett, Susan J., Malcarne, Vanessa L., Hudson, Marie, Levis, Brooke, Benedetti, Andrea, Mouthon, Luc, Thombs, Brett D., and Silva, Susan G.

Published
2023
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10. Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10‐Item Connor‐Davidson Resilience Scale in Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie‐Eve, Kwakkenbos, Linda, Wojeck, Robyn K., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Worron‐Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Thombs, Brett D., Fortuné, Catherine, Hudson, Marie, Benedetti, Andrea, Hummers, Laura K., Adams, Claire Elizabeth, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa‐Lynn, Nordlund, Julia, Provencher, Sabrina, Assassi, Shervin, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Nielsen, Karen, Pope, Janet, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, André, Marc, Olagne, Louis, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Cacciatore, Carlotta, Crichi, Benjamin, Farge‐Bancel, Dominique, Carreira, Patricia, Fare, Regina, Lopez, Maria Martin, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Jones, Niall, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Smets, Perrine, Steen, Virginia, Sutton, Evelyn, and Thorne, Carter

Published
2023
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11. HLA and autoantibodies define scleroderma subtypes and risk in African and European Americans and suggest a role for molecular mimicry

Author

Gourh, Pravitt, Safran, Sarah A, Alexander, Theresa, Boyden, Steven E, Morgan, Nadia D, Shah, Ami A, Mayes, Maureen D, Doumatey, Ayo, Bentley, Amy R, Shriner, Daniel, Domsic, Robyn T, Medsger, Thomas A, Ramos, Paula S, Silver, Richard M, Steen, Virginia D, Varga, John, Hsu, Vivien, Saketkoo, Lesley Ann, Schiopu, Elena, Khanna, Dinesh, Gordon, Jessica K, Kron, Brynn, Criswell, Lindsey A, Gladue, Heather, Derk, Chris T, Bernstein, Elana J, Bridges, S Louis, Shanmugam, Victoria K, Kolstad, Kathleen D, Chung, Lorinda, Kafaja, Suzanne, Jan, Reem, Trojanowski, Marcin, Goldberg, Avram, Korman, Benjamin D, Steinbach, Peter J, Chandrasekharappa, Settara C, Mullikin, James C, Adeyemo, Adebowale, Rotimi, Charles, Wigley, Fredrick M, Kastner, Daniel L, Boin, Francesco, and Remmers, Elaine F

Subjects
Biomedical and Clinical Sciences, Immunology, Autoimmune Disease, Clinical Research, Scleroderma, Genetics, 2.1 Biological and endogenous factors, Aetiology, Inflammatory and immune system, Black or African American, Alleles, Amino Acid Sequence, Antigens, Viral, Autoantibodies, Autoantigens, Computational Biology, Datasets as Topic, Female, Genetic Predisposition to Disease, HLA Antigens, Humans, Male, Mimiviridae, Molecular Mimicry, Phycodnaviridae, Protein Structure, Secondary, Risk Assessment, Scleroderma, Systemic, Sequence Homology, Amino Acid, White People, scleroderma, HLA, autoantibodies, molecular mimicry, mimivirus
Abstract

Systemic sclerosis (SSc) is a clinically heterogeneous autoimmune disease characterized by mutually exclusive autoantibodies directed against distinct nuclear antigens. We examined HLA associations in SSc and its autoantibody subsets in a large, newly recruited African American (AA) cohort and among European Americans (EA). In the AA population, the African ancestry-predominant HLA-DRB1*08:04 and HLA-DRB1*11:02 alleles were associated with overall SSc risk, and the HLA-DRB1*08:04 allele was strongly associated with the severe antifibrillarin (AFA) antibody subset of SSc (odds ratio = 7.4). These African ancestry-predominant alleles may help explain the increased frequency and severity of SSc among the AA population. In the EA population, the HLA-DPB1*13:01 and HLA-DRB1*07:01 alleles were more strongly associated with antitopoisomerase (ATA) and anticentromere antibody-positive subsets of SSc, respectively, than with overall SSc risk, emphasizing the importance of HLA in defining autoantibody subtypes. The association of the HLA-DPB1*13:01 allele with the ATA+ subset of SSc in both AA and EA patients demonstrated a transancestry effect. A direct correlation between SSc prevalence and HLA-DPB1*13:01 allele frequency in multiple populations was observed (r = 0.98, P = 3 × 10-6). Conditional analysis in the autoantibody subsets of SSc revealed several associated amino acid residues, mostly in the peptide-binding groove of the class II HLA molecules. Using HLA α/β allelic heterodimers, we bioinformatically predicted immunodominant peptides of topoisomerase 1, fibrillarin, and centromere protein A and discovered that they are homologous to viral protein sequences from the Mimiviridae and Phycodnaviridae families. Taken together, these data suggest a possible link between HLA alleles, autoantibodies, and environmental triggers in the pathogenesis of SSc.

Published
2020

12. Abatacept in Early Diffuse Cutaneous Systemic Sclerosis: Results of a Phase II Investigator‐Initiated, Multicenter, Double‐Blind, Randomized, Placebo‐Controlled Trial

Author

Khanna, Dinesh, Spino, Cathie, Johnson, Sindhu, Chung, Lorinda, Whitfield, Michael L, Denton, Christopher P, Berrocal, Veronica, Franks, Jennifer, Mehta, Bhavan, Molitor, Jerry, Steen, Virginia D, Lafyatis, Robert, Simms, Robert W, Gill, Anna, Kafaja, Suzanne, Frech, Tracy M, Hsu, Vivien, Domsic, Robyn T, Pope, Janet E, Gordon, Jessica K, Mayes, Maureen D, Schiopu, Elena, Young, Amber, Sandorfi, Nora, Park, Jane, Hant, Faye N, Bernstein, Elana J, Chatterjee, Soumya, Castelino, Flavia V, Ajam, Ali, Wang, Yue, Wood, Tammara, Allanore, Yannick, Matucci‐Cerinic, Marco, Distler, Oliver, Singer, Ora, Bush, Erica, Fox, David A, and Furst, Daniel E

Subjects
Biomedical and Clinical Sciences, Clinical Sciences, Brain Disorders, Clinical Research, Clinical Trials and Supportive Activities, 6.1 Pharmaceuticals, Evaluation of treatments and therapeutic interventions, Abatacept, Adult, Double-Blind Method, Female, Gene Expression, Gene Expression Profiling, Humans, Male, Middle Aged, Patient Reported Outcome Measures, Scleroderma, Diffuse, Sequence Analysis, RNA, Severity of Illness Index, Skin, Treatment Outcome, Tumor Necrosis Factor Inhibitors, Visual Analog Scale, Vital Capacity, Immunology, Public Health and Health Services, Arthritis & Rheumatology, Clinical sciences
Abstract

ObjectiveT cells play a key role in the pathogenesis of early systemic sclerosis. This study was undertaken to assess the safety and efficacy of abatacept in patients with diffuse cutaneous systemic sclerosis (dcSSc).MethodsIn this 12-month, randomized, double-blind, placebo-controlled trial, participants were randomized 1:1 to receive either subcutaneous abatacept 125 mg or matching placebo, stratified by duration of dcSSc. Escape therapy was allowed at 6 months for worsening disease. The coprimary end points were change in the modified Rodnan skin thickness score (MRSS) compared to baseline and safety over 12 months. Differences in longitudinal outcomes were assessed according to treatment using linear mixed models, with outcomes censored after initiation of escape therapy. Skin tissue obtained from participants at baseline was classified into intrinsic gene expression subsets.ResultsAmong 88 participants, the adjusted mean change in the MRSS at 12 months was -6.24 units for those receiving abatacept and -4.49 units for those receiving placebo, with an adjusted mean treatment difference of -1.75 units (P = 0.28). Outcomes for 2 secondary measures (Health Assessment Questionnaire disability index and a composite measure) were clinically and statistically significantly better with abatacept. The proportion of subjects in whom escape therapy was needed was higher in the placebo group relative to the abatacept group (36% versus 16%). In the inflammatory and normal-like skin gene expression subsets, decline in the MRSS over 12 months was clinically and significantly greater in the abatacept group versus the placebo group (P < 0.001 and P = 0.03, respectively). In the abatacept group, adverse events occurred in 35 participants versus 40 participants in the placebo group, including 2 deaths and 1 death, respectively.ConclusionIn this phase II trial, abatacept was well-tolerated, but change in the MRSS was not statistically significant. Secondary outcome measures, including gene expression subsets, showed evidence in support of abatacept. These data should be confirmed in a phase III trial.

Published
2020

13. Evaluation of Measurement Properties and Differential Item Functioning in the English and French Versions of the University of California, Los Angeles, Loneliness Scale‐6: A Scleroderma Patient‐Centered Intervention Network (SPIN) Study

Author

S. Rapoport, Chelsea, Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie‐Eve, Henry, Richard S., Mouthon, Luc, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Sauvé, Maureen, Richard, Michelle, Welling, Joep, Varga, John, Adams, Claire E., Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Bartlett, Susan J., Hudson, Marie, Benedetti, Andrea, Gottesman, Karen, Hummers, Laura K., Lawrie‐Jones, Amanda, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., El‐Baalbaki, Ghassan, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Pope, Janet, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, Crichi, Benjamin, Farge‐Bancel, Dominique, André, Marc, Olagne, Louis, Smets, Perrine, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Fare, Regina, Martin, Maria, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Denton, Christopher, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Hoa, Sabrina, Jones, Niall, Kafaja, Suzanne, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, and Varga, John

Published
2023
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14. 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Screening and Monitoring of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases.

Author

Johnson, Sindhu R., Bernstein, Elana J., Bolster, Marcy B., Chung, Jonathan H., Danoff, Sonye K., George, Michael D., Khanna, Dinesh, Guyatt, Gordon, Mirza, Reza D., Aggarwal, Rohit, Allen, Aberdeen, Assassi, Shervin, Buckley, Lenore, Chami, Hassan A., Corwin, Douglas S., Dellaripa, Paul F., Domsic, Robyn T., Doyle, Tracy J., Falardeau, Catherine Marie, and Frech, Tracy M.

Subjects
*MEDICAL protocols, *PULMONARY function tests, *BIOPSY, *OXYGEN saturation, *PROFESSIONAL associations, *INTERSTITIAL lung diseases, *CHEST X rays, *SYSTEMATIC reviews, *VOTING, *AUTOIMMUNE diseases, *PATIENT monitoring, *BRONCHOSCOPY, *RHEUMATISM, *DISEASE risk factors, *DISEASE complications
Abstract

Objective: We provide evidence‐based recommendations regarding screening for interstitial lung disease (ILD) and the monitoring for ILD progression in people with systemic autoimmune rheumatic diseases (SARDs), specifically rheumatoid arthritis, systemic sclerosis, idiopathic inflammatory myopathies, mixed connective tissue disease, and Sjögren disease. Methods: We developed clinically relevant population, intervention, comparator, and outcomes questions related to screening and monitoring for ILD in patients with SARDs. A systematic literature review was performed, and the available evidence was rated using the Grading of Recommendations, Assessment, Development, and Evaluation methodology. A Voting Panel of interdisciplinary clinician experts and patients achieved consensus on the direction and strength of each recommendation. Results: Fifteen recommendations were developed. For screening people with these SARDs at risk for ILD, we conditionally recommend pulmonary function tests (PFTs) and high‐resolution computed tomography of the chest (HRCT chest); conditionally recommend against screening with 6‐minute walk test distance (6MWD), chest radiography, ambulatory desaturation testing, or bronchoscopy; and strongly recommend against screening with surgical lung biopsy. We conditionally recommend monitoring ILD with PFTs, HRCT chest, and ambulatory desaturation testing and conditionally recommend against monitoring with 6MWD, chest radiography, or bronchoscopy. We provide guidance on ILD risk factors and suggestions on frequency of testing to evaluate for the development of ILD in people with SARDs. Conclusion: This clinical practice guideline presents the first recommendations endorsed by the American College of Rheumatology and American College of Chest Physicians for the screening and monitoring of ILD in people with SARDs. [ABSTRACT FROM AUTHOR]

Published
2024
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15. 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Treatment of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases.

Author

Johnson, Sindhu R., Bernstein, Elana J., Bolster, Marcy B., Chung, Jonathan H., Danoff, Sonye K., George, Michael D., Khanna, Dinesh, Guyatt, Gordon, Mirza, Reza D., Aggarwal, Rohit, Allen, Aberdeen, Assassi, Shervin, Buckley, Lenore, Chami, Hassan A., Corwin, Douglas S., Dellaripa, Paul F., Domsic, Robyn T., Doyle, Tracy J., Falardeau, Catherine Marie, and Frech, Tracy M.

Subjects
*RHEUMATISM treatment, *AUTOIMMUNE disease treatment, *MEDICAL protocols, *INTERSTITIAL lung diseases, *DESCRIPTIVE statistics, *SYSTEMATIC reviews, *PHYSICIANS, *DATA analysis software, *ADULTS
Abstract

Objective: We provide evidence‐based recommendations regarding the treatment of interstitial lung disease (ILD) in adults with systemic autoimmune rheumatic diseases (SARDs). Methods: We developed clinically relevant population, intervention, comparator, and outcomes questions. A systematic literature review was then performed, and the available evidence was rated using the Grading of Recommendations, Assessment, Development, and Evaluation methodology. A panel of clinicians and patients reached consensus on the direction and strength of the recommendations. Results: Thirty‐five recommendations were generated (including two strong recommendations) for first‐line SARD‐ILD treatment, treatment of SARD‐ILD progression despite first‐line ILD therapy, and treatment of rapidly progressive ILD. The strong recommendations were against using glucocorticoids in systemic sclerosis–ILD as a first‐line ILD therapy and after ILD progression. Otherwise, glucocorticoids are conditionally recommended for first‐line ILD treatment in all other SARDs. Conclusion: This clinical practice guideline presents the first recommendations endorsed by the American College of Rheumatology and American College of Chest Physicians for the treatment of ILD in people with SARDs. [ABSTRACT FROM AUTHOR]

Published
2024
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16. Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology/American College of Chest Physicians Interstitial Lung Disease Guidelines.

Author

Mirza, Reza D., Bolster, Marcy B., Johnson, Sindhu R., Allen, Aberdeen, Bernstein, Elana J., Chung, Jonathan H., Danoff, Sonye K., Falardeau, Catherine, Guyatt, Gordon, Ivlev, Ilya, Khanna, Dinesh, Nesbitt, Kiana T., Turner, Amy, Uhl, Stacey, and George, Michael D.

Subjects
PATIENT participation, CONNECTIVE tissue diseases, INTERSTITIAL lung diseases, RHEUMATISM, SYSTEMIC scleroderma
Abstract

Objective: Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients' values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs). Methods: We conducted a cross‐sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema. Results: Twenty‐one patients (75% women) participated, with a mean age of 53 years (range 33–73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients' priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations. Conclusion: Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient‐identified themes played a critical role in ILD guideline development and provide core elements for shared decision‐making as clinicians make management and therapeutic decisions with patients with SARD‐associated ILD. [ABSTRACT FROM AUTHOR]

Published
2024
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17. Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study

Author

Henry, Richard S., Gottesman, Karen, Hudson, Marie, Hummers, Laura K., Malcarne, Vanessa L., Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, El-Baalbaki, Ghassan, Ells, Carolyn, Fligelstone, Kim, Fortuné, Catherine, Frech, Tracy, Gietzen, Amy, Guillot, Geneviève, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Richard, Michelle, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Ait Abdallah, Nassim, Albert, Alexandra, André, Marc, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Crichi, Benjamin, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Gyger, Genevieve, Hachulla, Eric, Herrick, Ariane L, Hoa, Sabrina, Ikic, Alena, Jones, Niall, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin, Maria, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Bourgeault, Angelica, Cañedo Ayala, Mara, Carboni Jiménez, Andrea, Discepola, Marie-Nicole, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Lee, Yvonne C, Fox, Rina S, Kwakkenbos, Linda, Levis, Brooke, Carrier, Marie-Eve, Welling, Joep, Sauvé, Maureen, Mouthon, Luc, Benedetti, Andrea, Bartlett, Susan J, Varga, John, and Thombs, Brett D

Published
2021
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18. Reliability and Validity of the Tender and Swollen Joint Counts and the Modified Rodnan Skin Score in Early Diffuse Cutaneous Systemic Sclerosis: Analysis from the Prospective Registry of Early Systemic Sclerosis Cohort.

Author

Gordon, Jessica K, Girish, Gandikota, Berrocal, Veronica J, Zhang, Meng, Hatzis, Christopher, Assassi, Shervin, Bernstein, Elana J, Domsic, Robyn T, Hant, Faye N, Hinchcliff, Monique, Schiopu, Elena, Steen, Virginia D, Frech, Tracy M, and Khanna, Dinesh

Subjects
Joints, Skin, Humans, Scleroderma, Diffuse, Disability Evaluation, Physical Examination, Severity of Illness Index, Registries, Prospective Studies, Reproducibility of Results, Adult, Middle Aged, Female, Male, Young Adult, DIAGNOSTIC IMAGING, INFECTIONS AND ARTHRITIS, JOINT COUNT, OUTCOME MEASURES, SYSTEMIC SCLEROSIS, ULTRASONOGRAPHY, Clinical Research, Clinical Sciences, Immunology, Public Health and Health Services, Arthritis & Rheumatology
Abstract

ObjectiveTo determine the inter/intraobserver reliability of the tender and swollen joint counts (TJC, SJC) and the modified Rodnan Skin Score (mRSS) in diffuse cutaneous systemic sclerosis (dcSSc) and to assess content validity of the TJC/SJC.MethodsTen rheumatologists completed the SJC, TJC, and mRSS on 7 patients. Musculoskeletal ultrasound (MSUS) was performed.ResultsInterobserver and intraobserver reliability for the TJC was 0.97 and 0.99, for the SJC was 0.24 and 0.71, and for the mRSS was 0.81 and 0.94, respectively. MSUS abnormalities did not correspond with SJC/TJC.ConclusionWe demonstrate excellent inter- and intraobserver reliability for the mRSS and TJC in dcSSc. However, the SJC and TJC did not correspond to MSUS.

Published
2017

19. Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Wu, Yin, Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Negeri, Zelalem, Patten, Scott, Bartlett, Susan J., Mouthon, Luc, Varga, John, Benedetti, Andrea, and Thombs, Brett D.

Published
2021
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20. Post-acute COVID-19 syndrome

Author

Nalbandian, Ani, Sehgal, Kartik, Gupta, Aakriti, Madhavan, Mahesh V., McGroder, Claire, Stevens, Jacob S., Cook, Joshua R., Nordvig, Anna S., Shalev, Daniel, Sehrawat, Tejasav, Ahluwalia, Neha, Bikdeli, Behnood, Dietz, Donald, Der-Nigoghossian, Caroline, Liyanage-Don, Nadia, Rosner, Gregg F., and Bernstein, Elana J.

Subjects
Biological sciences, Health
Abstract

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the pathogen responsible for the coronavirus disease 2019 (COVID-19) pandemic, which has resulted in global healthcare crises and strained health resources. As the population of patients recovering from COVID-19 grows, it is paramount to establish an understanding of the healthcare issues surrounding them. COVID-19 is now recognized as a multi-organ disease with a broad spectrum of manifestations. Similarly to post-acute viral syndromes described in survivors of other virulent coronavirus epidemics, there are increasing reports of persistent and prolonged effects after acute COVID-19. Patient advocacy groups, many members of which identify themselves as long haulers, have helped contribute to the recognition of post-acute COVID-19, a syndrome characterized by persistent symptoms and/or delayed or long-term complications beyond 4 weeks from the onset of symptoms. Here, we provide a comprehensive review of the current literature on post-acute COVID-19, its pathophysiology and its organ-specific sequelae. Finally, we discuss relevant considerations for the multidisciplinary care of COVID-19 survivors and propose a framework for the identification of those at high risk for post-acute COVID-19 and their coordinated management through dedicated COVID-19 clinics. A comprehensive review of the current literature on post-acute COVID-19, also referred to as long COVID, its pathophysiology and its organ-specific sequelae highlights the need for multidisciplinary follow-up and care of COVID-19 survivors., Author(s): Ani Nalbandian [sup.1] , Kartik Sehgal [sup.2] [sup.3] [sup.4] , Aakriti Gupta [sup.1] [sup.5] [sup.6] , Mahesh V. Madhavan [sup.1] [sup.5] , Claire McGroder [sup.7] , Jacob S. Stevens [...]

Published
2021
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21. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Thombs, Brett D., Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Patten, Scott, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Bartlett, Susan J., Mouthon, Luc, Varga, John, and Benedetti, Andrea

Published
2020
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22. Safety and efficacy of abatacept in early diffuse cutaneous systemic sclerosis (ASSET): open-label extension of a phase 2, double-blind randomised trial

Author

Chung, Lorinda, Spino, Cathie, McLain, Richard, Johnson, Sindhu R, Denton, Christopher P, Molitor, Jerry A, Steen, Virginia D, Lafyatis, Robert, Simms, Robert W, Kafaja, Suzanne, Frech, Tracy M, Hsu, Vivien, Domsic, Robyn T, Pope, Janet E, Gordon, Jessica K, Mayes, Maureen D, Sandorfi, Nora, Hant, Faye N, Bernstein, Elana J, Chatterjee, Soumya, Castelino, Flavia V, Ajam, Ali, Allanore, Yannick, Matucci-Cerinic, Marco, Whitfield, Michael L, Distler, Oliver, Singer, Ora, Young, Amber, Nagaraja, Vivek, Fox, David A, Furst, Daniel E, and Khanna, Dinesh

Published
2020
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24. Performance of GAP and ILD-GAP models in predicting lung transplant or death in interstitial pneumonia with autoimmune features.

Author

Allen, Michael R, Alevizos, Michail K, Zhang, David, and Bernstein, Elana J

Subjects
RISK assessment, LUNG transplantation, DEATH, PREDICTION models, ACADEMIC medical centers, SEX distribution, INTERSTITIAL lung diseases, RETROSPECTIVE studies, DESCRIPTIVE statistics, TRANSTHEORETICAL model of change, AGE distribution, LONGITUDINAL method, AUTOIMMUNE diseases, MEDICAL records, ACQUISITION of data, SEROLOGY, IDIOPATHIC interstitial pneumonias, CALIBRATION, COMPARATIVE studies, CONFIDENCE intervals, DISEASE risk factors
Abstract

Objectives To assess the ability of two risk prediction models in interstitial lung disease (ILD) to predict death or lung transplantation in a cohort of patients with interstitial pneumonia with autoimmune features (IPAF). Methods We performed a retrospective cohort study of adults with IPAF at an academic medical centre. The primary outcome was a composite of lung transplantation or death. We applied the patient data to the previously described Gender–Age–Physiology (GAP) and ILD-GAP models to determine the ability of these models to predict the composite outcome. Model discrimination was assessed using the c-index, and model calibration was determined by comparing the incidence ratios of observed vs expected deaths. Results Ninety-four patients with IPAF were included. Mean (s. d.) age was 58 (13.5) years and the majority were female (62%). The majority met serologic and morphologic criteria for IPAF (94% and 91%, respectively). The GAP model had a c-index of 0.664 (95% CI 0.547–0.781), while the ILD-GAP model had a c-index of 0.569 (95% CI 0.440–0.697). In those with GAP stage 1 or GAP stage 2 disease, calibration of the GAP model was satisfactory at 2 and 3 years for the cumulative end point of lung transplantation or death. Conclusion In patients with IPAF, the GAP model performed well as a predictor of lung transplantation or death at 2 years and 3 years from ILD diagnosis in patients with GAP stage 1 and GAP stage 2 disease. [ABSTRACT FROM AUTHOR]

Published
2024
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25. Prognostic significance of pericardial effusion in systemic sclerosis-associated pulmonary hypertension: analysis from the PHAROS Registry.

Author

Luo, Yiming, Gordon, Jessica K, Xu, Jiehui, Kolstad, Kathleen D, Chung, Lorinda, Steen, Virginia D, Bernstein, Elana J, and Investigators, PHAROS

Subjects
PERICARDIAL effusion, RESEARCH funding, PULMONARY hypertension, SCIENTIFIC observation, FISHER exact test, DESCRIPTIVE statistics, MANN Whitney U Test, LONGITUDINAL method, KAPLAN-Meier estimator, LOG-rank test, SYSTEMIC scleroderma, RESEARCH, STATISTICS, DATA analysis software, PROPORTIONAL hazards models, DISEASE complications
Abstract

Objectives Pulmonary hypertension (PH) is a leading cause of death in patients with SSc. The purpose of this study was to determine the prognostic significance of pericardial effusion in patients with SSc-PH. Methods Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS) is a prospective multicentre registry which enrolled patients with newly diagnosed SSc-PH from 2005 to 2016. The prognostic impact of pericardial effusion status, including those who ever or never had pericardial effusion, and those who had persistent or intermittent pericardial effusion, was analysed. Kaplan–Meier survival analyses, log-rank test, and multivariable Cox proportional hazards regression were performed. Results Of the 335 patients with SSc-PH diagnosed by right heart catheterization and documentation of pericardial effusion presence or absence on echocardiogram, 166 (50%) ever had pericardial effusion. Ever having pericardial effusion was not predictive of survival (log-rank test P  = 0.49). Of the 245 SSc-PH patients who had at least two echocardiograms, 44% had a change in pericardial effusion status over an average of 4.3 years of follow up. Having a persistent pericardial effusion was an independent predictor of survival [adjusted hazard ratio (aHR)=2.34, 95% CI 1.20, 4.64, P  = 0.002], while intermittent pericardial effusion was not a predictor of survival (aHR = 0.89, 95% CI 0.52, 1.56, P  = 0.68), in a multivariable-adjusted analysis. Conclusion Persistent pericardial effusion, but not ever having had pericardial effusion or intermittent pericardial effusion, was independently associated with poorer survival. Incorporating information from serial echocardiograms may help clinicians better prognosticate survival in their SSc-PH patients. [ABSTRACT FROM AUTHOR]

Published
2024
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26. Protocol for a partially nested randomised controlled trial to evaluate the effectiveness of the scleroderma patient-centered intervention network COVID-19 home-isolation activities together (SPIN-CHAT) program to reduce anxiety among at-risk scleroderma patients

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Baron, Murray, Furst, Daniel E., Gottesman, Karen, Malcarne, Vanessa, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Riggs, Robert, Wigley, Fredrick, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Pope, Janet, Portales, Alexandra, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, André, Marc, Arsenault, Guylaine, Benzidia, Ilham, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Cohen, Pascal, Correia, Chase, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dubois, Sandrine, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gill, Anna, Gordon, Jessica, Granel-Rey, Brigitte, Gyger, Genevieve, Hachulla, Eric, Hatron, Pierre-Yves, Herrick, Ariane L., Hij, Adrian, Hoa, Sabrina, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Liang, Patrick, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin, Maria, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Smets, Perrine, Smith, Doug, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Stevens, Wendy, Sutton, Evelyn, Terrier, Benjamin, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Ostbo, Nora, Thombs, Brett D., Kwakkenbos, Linda, Carrier, Marie-Eve, Bourgeault, Angelica, Tao, Lydia, Harb, Sami, Gagarine, Maria, Rice, Danielle, Bustamante, Laura, Ellis, Kelsey, Duchek, Delaney, Wu, Yin, Bhandari, Parash Mani, Neupane, Dipika, Carboni-Jiménez, Andrea, Henry, Richard S., Krishnan, Ankur, Sun, Ying, Levis, Brooke, He, Chen, Turner, Kimberly A., Benedetti, Andrea, Culos-Reed, Nicole, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bartlett, Susan J., Dyas, Laura, and Patten, Scott

Published
2020
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27. Clinical characteristics, visceral involvement, and mortality in at-risk or early diffuse systemic sclerosis: a longitudinal analysis of an observational prospective multicenter US cohort

Author

Jaafar, Sara, Lescoat, Alain, Huang, Suiyuan, Gordon, Jessica, Hinchcliff, Monique, Shah, Ami A., Assassi, Shervin, Domsic, Robyn, Bernstein, Elana J., Steen, Virginia, Elliott, Sabrina, Hant, Faye, Castelino, Flavia V., Shanmugam, Victoria K., Correia, Chase, Varga, John, Nagaraja, Vivek, Roofeh, David, Frech, Tracy, and Khanna, Dinesh

Published
2021
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29. Experiences of telehealth during and after the COVID-19 pandemic and preferences for future care of people with systemic sclerosis: a cross-sectional study

Author

Adams, Claire E., Gottesman, Karen, Hudson, Marie, Hummers, Laura K., Lawrie-Jones, Amanda, Malcarne, Vanessa L., Mayes, Maureen D., Richard, Michelle, Wojeck, Robyn K., El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Alric, Laurent, André, Marc, Beaslay, Floryan, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Blaise, Sophie, Bories, Eva, Bruns, Alessandra, Cacciatore, Carlotta, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Deltombe, Thylbert, Denton, Christopher, Desroche, Tannvir, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gauzère, Loraine, Gerber, Anne, Gordon, Jessica K., Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Geneviève, Hachulla, Eric, Hoa, Sabrina, Hughes, Michael, Ikic, Alena, Khalidi, Nader, Lakin, Kimberly S., Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin Lopez, Maria, Martin, Thierry, Masetto, Ariel, Mekinian, Arsène, Melchor Díaz, Sheila, Mourguet, Morgane, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Rodríguez Almazar, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert F., Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Wilcox, Pearce, Ayala, Mara Cañedo, Cook, Vanessa, Dal Santo, Cassidy, Dal Santo, Tiffany, D'onofrio, Monica, Neyer, Marieke Alexandra, Nassar, Elsa-Lynn, Virgili-Gervais, Gabrielle, Carrier, Marie-Eve, Kwakkenbos, Linda, Henry, Richard S, Hu, Sophie, Provencher, Sabrina, Golberg, Meira, Bartlett, Susan J, Mouthon, Luc, Patten, Scott B, Varga, John, Benedetti, Andrea, and Thombs, Brett D

Published
2024
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34. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Author

Wojeck, Robyn K., primary, Knisely, Mitchell R., additional, Bailey, Donald E., additional, Somers, Tamara J., additional, Kwakkenbos, Linda, additional, Carrier, Marie-Eve, additional, Nielson, Warren R., additional, Bartlett, Susan J., additional, Malcarne, Vanessa L., additional, Hudson, Marie, additional, Levis, Brooke, additional, Benedetti, Andrea, additional, Mouthon, Luc, additional, Thombs, Brett D., additional, Silva, Susan G., additional, Adams, Claire E., additional, Henry, Richard S., additional, Fortuné, Catherine, additional, Gottesman, Karen, additional, Guillot, Geneviève, additional, Hummers, Laura K., additional, Lawrie-Jones, Amanda, additional, Mayes, Maureen D., additional, Richard, Michelle, additional, Sauvé, Maureen, additional, Assassi, Shervin, additional, El-Baalbaki, Ghassan, additional, Fligelstone, Kim, additional, Frech, Tracy, additional, Gietzen, Amy, additional, Harel, Daphna, additional, Hinchcliff, Monique, additional, Johnson, Sindhu R., additional, Larche, Maggie, additional, Leite, Catarina, additional, Nguyen, Christelle, additional, Nielsen, Karen, additional, Pope, Janet, additional, Rannou, François, additional, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Abdallah, Nassim Ait, additional, André, Marc, additional, Bernstein, Elana J., additional, Berthier, Sabine, additional, Bissonnette, Lyne, additional, Bruns, Alessandra, additional, Carreira, Patricia, additional, Casadevall, Marion, additional, Chaigne, Benjamin, additional, Chung, Lorinda, additional, Crichi, Benjamin, additional, Denton, Christopher, additional, Domsic, Robyn, additional, Dunne, James V., additional, Dunogue, Bertrand, additional, Fare, Regina, additional, Farge-Bancel, Dominique, additional, Fortin, Paul R., additional, Gordon, Jessica, additional, Granel-Rey, Brigitte, additional, Guffroy, Aurélien, additional, Gyger, Genevieve, additional, Hachulla, Eric, additional, Hoa, Sabrina, additional, Ikic, Alena, additional, Kafaja, Suzanne, additional, Khalidi, Nader, additional, Lakin, Kimberly, additional, Lambert, Marc, additional, Launay, David, additional, Lee, Yvonne C., additional, Maillard, Hélène, additional, Maltez, Nancy, additional, Manning, Joanne, additional, Marie, Isabelle, additional, Lopez, Maria Martin, additional, Martin, Thierry, additional, Masetto, Ariel, additional, Maurier, François, additional, Mekinian, Arsene, additional, Díaz, Sheila Melchor, additional, Nikpour, Mandana, additional, Olagne, Louis, additional, Poindron, Vincent, additional, Proudman, Susanna, additional, Régent, Alexis, additional, Rivière, Sébastien, additional, Robinson, David, additional, Almazar, Esther Rodríguez, additional, Roux, Sophie, additional, Smets, Perrine, additional, Sobanski, Vincent, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Varga, John, additional, Wilcox, Pearce, additional, Ayala, Mara Cañedo, additional, Cook, Vanessa, additional, Hu, Sophie, additional, Matthews, Bianca, additional, Nassar, Elsa-Lynn, additional, Neyer, Marieke Alexandra, additional, Nordlund, Julia, additional, and Provencher, Sabrina, additional

Published
2023
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36. Incidence of Interstitial Lung Abnormalities: The MESA Lung Study

Author

McGroder, Claire F., primary, Hansen, Spencer, additional, Hinckley Stukovsky, Karen, additional, Zhang, David, additional, Nath, P. Hrudaya, additional, Salvatore, Mary M., additional, Sonavane, Sushilkumar K., additional, Terry, Nina, additional, Stowell, Justin T., additional, D'Souza, Belinda M., additional, Leb, Jay S., additional, Dumeer, Shifali, additional, Aziz, Muhammad U., additional, Batra, Kiran, additional, Hoffman, Eric A., additional, Bernstein, Elana J., additional, Kim, John S., additional, Podolanczuk, Anna J., additional, Rotter, Jerome I., additional, Manichaikul, Ani W., additional, Rich, Stephen S., additional, Lederer, David J., additional, Barr, R. Graham, additional, McClelland, Robyn L., additional, and Garcia, Christine Kim, additional

Published
2023
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37. Are there more acute cardiac hospitalizations in winter in patients with systemic sclerosis? An analysis from the National Inpatient Sample

Author

Luo, Yiming, Ross, Laura, Zheng, Jiayi, and Bernstein, Elana J

Abstract

Objective: Cold-induced transient myocardial ischemia has been described in patients with systemic sclerosis. The clinical impact of cold exposure in systemic sclerosis patients with acute cardiac conditions is unknown. We compared the seasonal variation of acute cardiac hospitalizations in patients with and without systemic sclerosis.Methods: We performed a retrospective cross-sectional study using the National Inpatient Sample from 2016 to 2019. The primary outcome was acute cardiac hospitalization primarily due to heart failure, acute myocardial infarction, or cardiac arrhythmias. We compared the proportion of acute cardiac hospitalizations in each season in patients with and without systemic sclerosis. We also performed a subgroup analysis by US geographic region (Northeast, Midwest, South, West).Results: There were a total of 10,118,002 acute cardiac hospitalizations over the 4-year study period. Compared to those without systemic sclerosis, patients with systemic sclerosis who were hospitalized for acute cardiac care were younger (mean age 67 ± 13 vs 70 ± 14 years, p < 0.01), a greater proportion were female (82% vs 45%, p < 0.01), and a smaller proportion were Caucasian (68% vs 71%, p < 0.01). There was a lesser proportion of traditional cardiovascular risk factors in systemic sclerosis compared to non-systemic sclerosis patients. There was no significant difference in the proportion of winter admissions between systemic sclerosis and non-systemic sclerosis patients for total acute cardiac hospitalizations (26.4% vs 25.9%, p = 0.51), heart failure (27.0% vs 26.5%, p = 0.64), acute myocardial infarction (26.9% vs 25.5%, p = 0.50), or arrhythmias (24.3% vs 25.0%, p = 0.68). The results were consistent across all four US geographic regions.Conclusion: Our study did not support that patients with systemic sclerosis had a disproportionally higher risk of acute cardiac hospitalization in winter compared to the general population. We found that systemic sclerosis patients hospitalized for acute cardiac care had a lower burden of traditional cardiovascular risk factors than their non-systemic sclerosis counterparts.

Published
2024
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39. CONQUER Scleroderma: association of gastrointestinal tract symptoms in early disease with resource utilization

Author

Luebker, Sarah, primary, Frech, Tracy, additional, Assassi, Shervin, additional, Skaug, Brian, additional, Gordon, Jessica K, additional, Lakin, Kimberly, additional, Bernstein, Elana J, additional, Luo, Yiming, additional, Steen, Virginia D, additional, Shah, Ami A, additional, Hummers, Laura K, additional, Richardson, Carrie, additional, Moore, Duncan F, additional, Khanna, Dinesh, additional, Castelino, Flavia V, additional, Chung, Lorinda, additional, Kapoor, Puneet, additional, Hant, Faye N, additional, Shanmugam, Victoria K, additional, VanBuren, John M, additional, Alvey, Jessica, additional, Harding, Monica, additional, Shah, Ankoor, additional, Makol, Ashima, additional, Lebiedz-Odrobina, Dorota, additional, Thomas, Julie K, additional, Volkmann, Elizabeth R, additional, Molitor, Jerry A, additional, and Sandorfi, Nora, additional

Published
2023
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40. Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10‐Item Connor‐DavidsonResilience Scale in Systemic Sclerosis: A Scleroderma Patient‐CenteredIntervention Network Cohort Study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie‐Eve, Kwakkenbos, Linda, Wojeck, Robyn K., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Worron‐Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Thombs, Brett D., Fortuné, Catherine, Hudson, Marie, Benedetti, Andrea, Hummers, Laura K., Adams, Claire Elizabeth, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa‐Lynn, Nordlund, Julia, Provencher, Sabrina, Assassi, Shervin, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Nielsen, Karen, Pope, Janet, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, André, Marc, Olagne, Louis, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Cacciatore, Carlotta, Crichi, Benjamin, Farge‐Bancel, Dominique, Carreira, Patricia, Fare, Regina, Lopez, Maria Martin, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Jones, Niall, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Smets, Perrine, Steen, Virginia, Sutton, Evelyn, and Thorne, Carter

Abstract

Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English‐ and French‐language versions of the 10‐item Connor‐Davidson Resilience Scale (CD‐RISC‐10) in SSc. Eligible participants were enrolled in the Scleroderma Patient‐centered Intervention Network Cohort and completed the CD‐RISC‐10 between August 2022 and January 2023. We used confirmatory factor analysis (CFA) to evaluate the CD‐RISC‐10 factor structure and conducted DIF analysis across languages with Multiple Indicators Multiple Causes models. We tested convergent validity with another measure of resilience and measures of self‐esteem and depression and anxiety symptoms. We assessed internal consistency and test–retest reliability using Cronbach's alpha and intraclass correlation coefficient (ICC). A total of 962 participants were included in this analysis. CFA supported a single‐factor structure (Tucker–Lewis index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.08 [90% confidence interval (90% CI) 0.07, 0.09]). We found no meaningful DIF. Internal consistency was high (α = 0.93 [95% CI 0.92, 0.94]), and we found that correlations with other measures of psychological functioning were moderate to large (|r| = 0.57–0.78) and confirmed study hypotheses. The scale showed good 1–2‐week test–retest reliability (ICC 0.80 [95% CI 0.75, 0.85]) in a subsample of 230 participants. The CD‐RISC‐10 is a valid and reliable measure of resilience in SSc, with score comparability across English and French versions.

Published
2023
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41. A qualitative interview study exploring the psychological health impacts of the SPIN-CHAT program among people with systemic sclerosis at the onset of COVID-19: perceptions of trial participants and research team members

Author

Wurz, Amanda, primary, Duchek, Delaney, additional, Ellis, Kelsey, additional, Bansal, Mannat, additional, Carrier, Marie-Eve, additional, Tao, Lydia, additional, Dyas, Laura, additional, Kwakkenbos, Linda, additional, Levis, Brooke, additional, El-Baalbaki, Ghassan, additional, Rice, Danielle B., additional, Wu, Yin, additional, Henry, Richard S., additional, Bustamante, Laura, additional, Harb, Sami, additional, Hebblethwaite, Shannon, additional, Patten, Scott B., additional, Bartlett, Susan J., additional, Varga, John, additional, Mouthon, Luc, additional, Markham, Sarah, additional, Thombs, Brett D., additional, Culos-Reed, S. Nicole, additional, Fortuné, Catherine, additional, Gietzen, Amy, additional, Guillot, Geneviève, additional, Nielsen, Karen, additional, Lewis, Nancy, additional, Richard, Michelle, additional, Sauvé, Maureen, additional, Welling, Joep, additional, Battaglio, Lacey, additional, Burger, Tina, additional, Burleigh, Adrienne, additional, Collins, Peggy, additional, Davila, Jacob, additional, Inglese, Louise, additional, Kaplan, Franny, additional, Konrad, Violet, additional, Petrella, Silvia, additional, Potvin, Audrey, additional, Puccio, Natalie, additional, Gottesman, Karen, additional, Hudson, Marie, additional, Hummers, Laura K., additional, Lawrie-Jones, Amanda, additional, Malcarne, Vanessa L., additional, Mayes, Maureen D., additional, Nielson, Warren R., additional, Assassi, Shervin, additional, Ells, Carolyn, additional, Fligelstone, Kim, additional, Frech, Tracy, additional, Harel, Daphna, additional, Hinchcliff, Monique, additional, Johnson, Sindhu R., additional, Larche, Maggie, additional, Leite, Catarina, additional, Nguyen, Christelle, additional, Pope, Janet, additional, Rannou, François, additional, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Ait Abdallah, Nassim, additional, André, Marc, additional, Bernstein, Elana J., additional, Berthier, Sabine, additional, Bissonnette, Lyne, additional, Bruns, Alessandra, additional, Carreira, Patricia, additional, Casadevall, Marion, additional, Chaigne, Benjamin, additional, Chung, Lorinda, additional, Crichi, Benjamin, additional, Denton, Christopher, additional, Domsic, Robyn, additional, Dunne, James V., additional, Dunogue, Bertrand, additional, Fare, Regina, additional, Farge-Bancel, Dominique, additional, Fortin, Paul R., additional, Gordon, Jessica, additional, Granel-Rey, Brigitte, additional, Guffroy, Aurélien, additional, Gyger, Genevieve, additional, Hachulla, Eric, additional, Herrick, Ariane L., additional, Hoa, Sabrina, additional, Ikic, Alena, additional, Jones, Niall, additional, Khalidi, Nader, additional, Lambert, Marc, additional, Launay, David, additional, Lee, Yvonne C., additional, Maillard, Hélène, additional, Maltez, Nancy, additional, Manning, Joanne, additional, Marie, Isabelle, additional, Lopez, Maria Martin, additional, Martin, Thierry, additional, Masetto, Ariel, additional, Maurier, François, additional, Mekinian, Arsene, additional, Díaz, Sheila Melchor, additional, Nikpour, Mandana, additional, Olagne, Louis, additional, Poindron, Vincent, additional, Proudman, Susanna, additional, Régent, Alexis, additional, Rivière, Sébastien, additional, Robinson, David, additional, Rodríguez Almazar, Esther, additional, Roux, Sophie, additional, Smets, Perrine, additional, Sobanski, Vincent, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Wilcox, Pearce, additional, Ayala, Mara Cañedo, additional, Discepola, Marie-Nicole, additional, Montemurro, Laury, additional, Nassar, Elsa Lynn, additional, Neyer, Marieke Alexandra, additional, Nordlund, Julia, additional, Østbø, Nora, additional, and Provencher, Sabrina, additional

Published
2023
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42. Additional file 1 of Expert consensus on the management of systemic sclerosis-associated interstitial lung disease

Author

Rahaghi, Franck F., Hsu, Vivien M., Kaner, Robert J., Mayes, Maureen D., Rosas, Ivan O., Saggar, Rajan, Steen, Virginia D., Strek, Mary E., Bernstein, Elana J., Bhatt, Nitin, Castelino, Flavia V., Chung, Lorinda, Domsic, Robyn T., Flaherty, Kevin R., Gupta, Nishant, Kahaleh, Bashar, Martinez, Fernando J., Morrow, Lee E., Moua, Teng, Patel, Nina, Shlobin, Oksana A., Southern, Brian D., Volkmann, Elizabeth R., and Khanna, Dinesh

Abstract

Additional file 1. Table S1. SSc-ILD Delphi Questionnaire 3 results. Table S2. SSc-ILD Delphi Supplemental Questionnaire 2 results

Published
2023
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43. World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) Core Set Development for Interstitial Lung Disease

Author

Saketkoo, Lesley Ann, Escorpizo, Reuben, Varga, Janos, Keen, Kevin John, Fligelstone, Kim, Birring, Surinder S., Alexanderson, Helene, Pettersson, Henrik, Chaudhry, Humza Ahmad, Poole, Janet L., Regardt, Malin, LeSage, Daphne, Sarver, Catherine, Lanario, Joseph, Renzoni, Elisabetta, Scholand, Mary Beth, Lammi, Matthew R., Kowal-Bielecka, Otylia, Distler, Oliver, Frech, Tracy, Shapiro, Lee, Varju, Cecilia, Volkmann, Elizabeth R., Bernstein, Elana J., Drent, Marjolein, Obi, Ogugua Ndili, Patterson, Karen C., Russell, Anne-Marie, Faculteit FHML Centraal, and RS: FHML non-thematic output

Subjects
CTD-ILD, JOINT USE, REHABILITATION, Pharmacology, DOMAINS, fibrosis, INSTRUMENTS, PATIENT, VALIDATION, RHEUMATOID-ARTHRITIS, ICD-11, patient-reported outcomes, cough, QUALITY-OF-LIFE, UPDATE, IDIOPATHIC PULMONARY-FIBROSIS, Pharmacology (medical), connective tissue
Abstract

Background: The World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) as a scientific method of disability data collection comprised of >1,200 categories describing the spectrum of impairment types (functional, symptoms-based and anatomical) under the bio-psycho-social model with consideration of environmental and personal factors (pf). ICF Core Sets and ICF Checklists are streamlined disease-specific resources for clinical use, service provision, and for use in health economics and health policy. ICF can disclose strengths and weaknesses across multiple patient-reported outcome measures (PROMs) and help consolidate best-fitting question-items from multiple PROMs. Interstitial lung diseases (ILDs), are generally progressive, with restrictive physiology sometimes occurring in the context of multi-organ autoimmunity/inflammatory conditions such as connective tissue diseases (CTDs). In spite of significant associated morbidity and potential disability, ILD has yet to be linked to the ICF.Methods: Each instrument and their question-items within the consensus-recommended core sets for clinical trials in ILD were deconstructed to single concept units, and then linked per updated ICF linkage rules. Inter-linker agreement was established. Three additional subsequently validated measures were also included.Results: One-hundred-eleven ICF categories were identified for ten PROMs and three traditional objective measures that were amenable to ICF linkage. The proportion of agreement ranged from 0.79 (95% CI: 0.62, 0.91) to 0.93 (0.76, 0.99) with the overall proportion of inter-linker agreement being very high 0.86 (0.82, 0.89) for the initial instruments, with 94–100% for the three additional PROMs. Thirty-four new ‘Personal Factors’ emerged to capture disease-specific qualities not elsewhere described in ICF, e.g. ‘pf_embarrassed by cough’ or ‘pf_panic/afraid when can’t get a breath’.Conclusion: This first known effort in ICF linkage of ILD has provided important revelations on the current utility of the ICF in lung disease. Results have indicated areas for meaningful assessment of ICF descriptors for lung impairment. The mapping across PROMs provides insight into possibilities of developing more streamline and precise instrumentation. Finally, familiarity with the ICF in ILD may enable clinicians to experience a smoother transition with the imminent harmonization of ICD and ICF, ICD-11.

Published
2022

44. High-resolution computed tomography of the chest for the screening, re-screening and follow-up of systemic sclerosis-associated interstitial lung disease: a EUSTAR-SCTC survey

Author

Bruni, Cosimo, Chung, Lorinda, Hoffmann-Vold, Anna Maria, Assassi, Shervin, Gabrielli, Armando, Khanna, Dinesh, Bernstein, Elana J, Distler, Oliver, and University of Zurich

Subjects
Scleroderma, Localized, Scleroderma, Systemic, Rheumatology, Immunology, 10051 Rheumatology Clinic and Institute of Physical Medicine, Immunology and Allergy, Humans, 610 Medicine & health, Lung Diseases, Interstitial, Tomography, X-Ray Computed, Lung, Follow-Up Studies
Abstract

High-resolution computed tomography (HRCT) of the chest is the gold standard to diagnose interstitial lung disease (ILD). A prior survey reported that fewer than 60% of SSc-treating rheumatologists order an HRCT for ILD screening in newly diagnosed SSc patients. Since then, efforts were initiated to increase awareness of HRCT as a screening tool. Aim of the present study was to assess efficacy of these awareness programs.European Scleroderma Trials and Research (EUSTAR) and Scleroderma Clinical Trials Consortium (SCTC) members answered a survey about the use of HRCT at diagnosis, the re-screening of patients with a negative baseline HRCT, and the follow-up of HRCT positive SSc-ILD patients. When HRCT was not routinely requested, additional details were collected.Among 205 physician responders, 95.6% would perform an HRCT at SSc diagnosis: 64.9% as routine screening for ILD (65.4% of SSc referral and 63.6% of non-referral physicians) and 30.7% upon clinical suspicion (95.2% in case of crackles on auscultation). Among non-screening physicians, clinical and ethical concerns were major driving factors for not ordering HRCTs. During follow-up, 79.0% of responders would repeat HRCTs in baseline negative cases: 14.1% as routine screening and 64.9% for diagnostic purposes. Finally, 93.2% of responders would repeat a chest HRCT after SSc-ILD diagnosis: 36.6% as yearly routine and 56.6% according to clinical evaluation.The use of baseline HRCT for the screening of SSc-ILD has slightly increased, but awareness programs should be adapted for further improvement. HRCT use in re-screening and follow-up may benefit from validated algorithms.

Published
2022

46. Systemic sclerosis associated interstitial lung disease: a conceptual framework for subclinical, clinical and progressive disease

Author

Roofeh, David, primary, Brown, Kevin K, additional, Kazerooni, Ella A, additional, Tashkin, Donald, additional, Assassi, Shervin, additional, Martinez, Fernando, additional, Wells, Athol U, additional, Raghu, Ganesh, additional, Denton, Christopher P, additional, Chung, Lorinda, additional, Hoffmann-Vold, Anna-Maria, additional, Distler, Oliver, additional, Johannson, Kerri A, additional, Allanore, Yannick, additional, Matteson, Eric L, additional, Kawano-Dourado, Leticia, additional, Pauling, John D, additional, Seibold, James R, additional, Volkmann, Elizabeth R, additional, Walsh, Simon L F, additional, Oddis, Chester V, additional, White, Eric S, additional, Barratt, Shaney L, additional, Bernstein, Elana J, additional, Domsic, Robyn T, additional, Dellaripa, Paul F, additional, Conway, Richard, additional, Rosas, Ivan, additional, Bhatt, Nitin, additional, Hsu, Vivien, additional, Ingegnoli, Francesca, additional, Kahaleh, Bashar, additional, Garcha, Puneet, additional, Gupta, Nishant, additional, Khanna, Surabhi, additional, Korsten, Peter, additional, Lin, Celia, additional, Mathai, Stephen C, additional, Strand, Vibeke, additional, Doyle, Tracy J, additional, Steen, Virginia, additional, Zoz, Donald F, additional, Ovalles-Bonilla, Juan, additional, Rodriguez-Pinto, Ignasi, additional, Shenoy, Padmanabha D, additional, Lewandoski, Andrew, additional, Belloli, Elizabeth, additional, Lescoat, Alain, additional, Nagaraja, Vivek, additional, Ye, Wen, additional, Huang, Suiyuan, additional, Maher, Toby, additional, and Khanna, Dinesh, additional

Published
2022
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47. MUC5B, telomere length and longitudinal quantitative interstitial lung changes: the MESA Lung Study

Author

Kim, John S, primary, Manichaikul, Ani W, additional, Hoffman, Eric A, additional, Balte, Pallavi, additional, Anderson, Michaela R, additional, Bernstein, Elana J, additional, Madahar, Purnema, additional, Oelsner, Elizabeth C, additional, Kawut, Steven M, additional, Wysoczanski, Artur, additional, Laine, Andrew F, additional, Adegunsoye, Ayodeji, additional, Ma, Jennie Z, additional, Taub, Margaret A, additional, Mathias, Rasika A, additional, Rich, Stephen S, additional, Rotter, Jerome I, additional, Noth, Imre, additional, Garcia, Christine Kim, additional, Barr, R Graham, additional, and Podolanczuk, Anna J, additional

Published
2022
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50. Evaluation of Measurement Properties and Differential Item Functioning in the English and French Versions of the University of California, Los Angeles, Loneliness Scale‐6: A Scleroderma Patient‐CenteredIntervention Network (SPIN) Study

Author

S. Rapoport, Chelsea, Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie‐Eve, Henry, Richard S., Mouthon, Luc, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Sauvé, Maureen, Richard, Michelle, Welling, Joep, Varga, John, Adams, Claire E., Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Bartlett, Susan J., Hudson, Marie, Benedetti, Andrea, Gottesman, Karen, Hummers, Laura K., Lawrie‐Jones, Amanda, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., El‐Baalbaki, Ghassan, Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Pope, Janet, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, Crichi, Benjamin, Farge‐Bancel, Dominique, André, Marc, Olagne, Louis, Smets, Perrine, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Fare, Regina, Martin, Maria, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Denton, Christopher, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Hoa, Sabrina, Jones, Niall, Kafaja, Suzanne, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, and Varga, John

Abstract

Loneliness has been associated with poorer health‐related quality of life but has not been studied in patients with systemic sclerosis (SSc). The current study was undertaken to examine and compare the psychometric properties of the English and French versions of the University of California, Los Angeles, Loneliness Scale‐6 (ULS‐6) in patients with SSc during the COVID‐19 pandemic. This study used baseline cross‐sectional data from 775 adults enrolled in the Scleroderma Patient‐Centered Intervention Network (SPIN) COVID‐19 Cohort. Reliability and validity of ULS‐6 scores overall and between languages were evaluated using confirmatory factor analysis (CFA), differential item functioning (DIF) through the multiple‐indicator multiple‐cause (MIMIC) model, omega/alpha calculation, and correlations of hypothesized convergent relationships. CFA for the total sample supported the single‐factor structure (comparative fit index [CFI] 0.96, standardized root mean residual [SRMR] 0.03), and all standardized factor loadings for items were large (0.60–0.86). The overall MIMIC model with language as a covariate fit well (CFI 0.94, SRMR 0.04, root mean square error of approximation 0.11). Statistically significant DIF was found for 3 items across language (βitem2= 0.14, P< 0.001; βitem4= –0.07, P= 0.01; βitem6= 0.13, P< 0.001), but these small differences were without practical measurement implications. Analyses demonstrated high internal consistency with no language‐based convergent validity differences. Analyses demonstrated evidence of acceptable reliability and validity of ULS‐6 scores in English‐ and French‐speaking adults with SSc. DIF analysis supported use of the ULS‐6 to examine comparative experiences of loneliness without adjusting for language.

Published
2023
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