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1. 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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2. 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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3. 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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4. 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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5. 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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6. Minimal Detectable Changes of the Health Assessment Questionnaire–Disability Index, Patient‐Reported Outcomes Measurement Information System‐29 Profile Version 2.0 Domains, and Patient Health Questionnaire‐8 in People With Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Cross‐Sectional Study

Author

Alkan, Afra, Carrier, Marie‐Eve, Henry, Richard S., Kwakkenbos, Linda, Bartlett, Susan J., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Hudson, Marie, Hummers, Laura K., Malcarne, Vanessa L., Mayes, Maureen D., Mouthon, Luc, Richard, Michelle, Wojeck, Robyn K., Worron‐Sauvé, Maureen, Benedetti, Andrea, Thombs, Brett D., Fortuné, Catherine, Adams, Claire Elizabeth, 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 P., 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, Hughes, Michael, Ikic, Alena, Jones, Niall, Kafaja, Suzanne, Khalidi, Nader, Lakin, Kimberly S., Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Lopez, Maria Martin, Martin, Thierry, Masetto, Ariel, Mekinian, Arsene, Díaz, Sheila Melchor, Mourguet, Morgane, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Almazar, Esther Rodríguez, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert F., Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Research, Medical, Cook, Vanessa, Santo, Cassidy Dal, Santo, Tiffany Dal, D'Onofrio, Monica, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, and Provencher, Sabrina

Abstract

Systemic sclerosis (SSc) is a rare, chronic autoimmune disorder associated with disability, diminished physical function, fatigue, pain, and mental health concerns. We assessed minimal detectable changes (MDCs) of the Health Assessment Questionnaire–Disability Index (HAQ‐DI), Patient‐Reported Outcomes Measurement Information System‐29 Profile version 2.0 (PROMIS‐29v2.0) domains, and Patient Health Questionnaire (PHQ)‐8 in people with SSc. Scleroderma Patient‐Centered Intervention Network Cohort participants completed the HAQ‐DI, PROMIS‐29v2.0 domains, and PHQ‐8 at baseline assessments from April 2014 until August 2023. We estimated MDC95 (smallest change that can be detected with 95% certainty) and MDC90 (smallest change that can be detected with 90% certainty) with 95% confidence intervals (CIs) generated via the percentile bootstrapping method resampling 1,000 times. We compared MDC estimates by age, sex, and SSc subtype. A total of 2,571 participants were included. Most were female (n = 2,241; 87%), and 38% (n = 976) had diffuse SSc. Mean (±SD) age was 54.9 (±12.7) years and duration since onset of first non‐Raynaud phenomenon symptom was 10.8 (±8.7) years. MDC95 estimate was 0.41 points (95% CI 0.40–0.42) for the HAQ‐DI, between 4.88 points (95% CI 4.72–5.05) and 9.02 points (95% CI 8.80–9.23) for the seven PROMIS‐29v2.0 domains, and 5.16 points (95% CI 5.06–5.26) for the PHQ‐8. MDC95 estimates were not materially different across subgroups. MDC95 and MDC90 estimates were precise and similar across age, sex, and SSc subtype groups. HAQ‐DI MDC95 and MDC90 were substantially larger than previous estimates of HAQ‐DI minimal important difference from several small studies. Minimally important differences of all measures should be evaluated in large studies using anchor‐based methods.

Published
2024
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7. 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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8. 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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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

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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10. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort

Author

Baron, Murray, Bartlett, Susan J., Furst, Dan, Gottesman, Karen, van den Hoogen, Frank, Mouthon, Luc, Nielson, Warren R., Poiraudeau, Serge, Riggs, Robert, Sauve, Maureen, Wigley, Fredrick, Boutron, Isabelle, Costa Maia, Angela, El-Baalbaki, Ghassan, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Fortune, Catherine, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hudson, Marie, Impens, Ann, Jang, Yeona, Johnson, Sindhu R., Kennedy, Ann Tyrell, Khanna, Dinesh, Larche, Maggie, Leite, Catarina, Marra, Carlo, Nielsen, Karen, Poole, Janet L., Pope, Janet, Rodriguez Reyna, Tatiana Sofia, Schouffoer, Anne A., Steele, Russell J., Suarez-Almazor, Maria E., Welling, Joep, Wong-Rieger, Durhane, Albert, Alexandra, Arsenault, Guylaine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Chung, Lorinda, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dunne, James V., Fortin, Paul, Gill, Anna, Gordon, Jessica, Gyger, Genevieve, Herrick, Ariane L., Hinchcliff, Monique, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Korman, Benjamin, Liang, Patrick, Manning, Joanne, Masetto, Ariel, Robinson, David, Roux, Sophie, Schiopu, Elena, Smith, Doug, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Delisle, Vanessa C., Fedoruk, Claire, Levis, Brooke, Pepin, Mia R., Persmann, Jennifer, Jewett, Lisa R., Kwakkenbos, Linda, Carrier, Marie-Eve, Malcarne, Vanessa L., Harcourt, Diana, Rumsey, Nichola, Mayes, Maureen D., Assassi, Shervin, Körner, Annett, Fox, Rina S., Gholizadeh, Shadi, Mills, Sarah D., Portales, Alexandra, and Thombs, Brett D.

Published
2017
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11. 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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12. 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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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‐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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14. Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study

Author

Lee, Yvonne C, primary, Fox, Rina S, additional, Kwakkenbos, Linda, additional, Levis, Brooke, additional, Carrier, Marie-Eve, additional, Welling, Joep, additional, Sauvé, Maureen, additional, Mouthon, Luc, additional, Benedetti, Andrea, additional, Bartlett, Susan J, additional, Varga, John, additional, Thombs, Brett D, additional, Henry, Richard S., additional, Gottesman, Karen, additional, Hudson, Marie, additional, Hummers, Laura K., additional, Malcarne, Vanessa L., additional, Mayes, Maureen D., additional, Nielson, Warren R., additional, Riggs, Robert, additional, Assassi, Shervin, additional, El-Baalbaki, Ghassan, additional, Ells, Carolyn, additional, Fligelstone, Kim, additional, Fortuné, Catherine, additional, Frech, Tracy, additional, Gietzen, Amy, additional, Guillot, Geneviève, 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, Richard, Michelle, additional, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Ait Abdallah, Nassim, additional, Albert, Alexandra, 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, Correia, Chase, 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, Gyger, Genevieve, additional, Hachulla, Eric, additional, Herrick, Ariane L, additional, Hoa, Sabrina, additional, Ikic, Alena, additional, Jones, Niall, additional, Kafaja, Suzanne, additional, Khalidi, Nader, additional, Lambert, Marc, additional, Launay, David, additional, Maillard, Hélène, additional, Maltez, Nancy, additional, Manning, Joanne, additional, Marie, Isabelle, additional, Martin, Maria, additional, Martin, Thierry, additional, Masetto, Ariel, additional, Maurier, François, additional, Mekinian, Arsene, additional, Melchor, Sheila, additional, Nikpour, Mandana, additional, Olagne, Louis, additional, Poindron, Vincent, additional, Proudman, Susanna, additional, Régent, Alexis, additional, Rivière, Sébastien, additional, Robinson, David, additional, Rodriguez, 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, Bourgeault, Angelica, additional, Cañedo Ayala, Mara, additional, Carboni Jiménez, Andrea, additional, Discepola, Marie-Nicole, additional, Gagarine, Maria, additional, Nordlund, Julia, additional, and Østbø, Nora, additional

Published
2021
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16. The Canadian Systemic Sclerosis Oral Health Study II: the relationship between oral and global health-related quality of life in systemic sclerosis

Author

Baron, Murray, Hudson, Marie, Tatibouet, Solène, Steele, Russell, Lo, Ernest, Gravel, Sabrina, Gyger, Geneviève, El Sayegh, Tarek, Pope, Janet, Fontaine, Audrey, Masetto, Ariel, Matthews, Debora, Sutton, Evelyn, Thie, Norman, Jones, Niall, Copete, Maria, Kolbinson, Dean, Markland, Janet, Nogueira-Filho, Getulio, Robinson, David, and Gornitsky, Mervyn

Published
2015
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17. Effectiveness and Safety of Tofacitinib in Canadian Patients With Rheumatoid Arthritis: Primary Results From a Prospective Observational Study

Author

Haraoui, Boulos, Khraishi, Majed, Choquette, Denis, Lisnevskaia, Larissa, Teo, Michelle, Kinch, Cassandra, Galos, Corina, Roy, Patrice, Gruben, David, Woolcott, John C., Vaillancourt, Julie, Sampalis, John S., Keystone, Edward C., Pont, Karen, Teo, Michelle, Chan, John, Jamal, Shahin, Baker, Milton, McCarthy, Timothy, Khraishi, Majed, Rahman, Al‐Amin Proton, Sutton, Evelyn, Lazovskis, Juris, Pavlova, Viktoria, Haaland, Derek A., Papneja, Tripti, Dixit, Sanjay, Pandith, Vikas, Boulos, Pauline, Lau, Arthur, Mulgund, Manisha, Rai, Raman, Dekis, Alaa, Ruban, Thanu, Chow, Andrew, Florica, Brandusa, Khan, Imtiaz, Thorne, Carter, Dhillon, Rajwinder, Lisnevskaia, Larissa, Jovaisas, Algis, Kapur, Suneil, Montgomery, Angela, Shaikh, Saeed, Karasik, Arthur, Keystone, Edward, Pedvis, Stacey, Anwar, Sabeen, Rodrigues, Jude, Fallavollita, Sabrina, Haraoui, Boulos, Shulz, Jan, Tsoukas, Alexander, Zummer, Michel, Bessette, Louis, Fortin, Paul R., Fortin, Isabelle, Attie, Nabil, Boire, Gilles, Masetto, Ariel, Lessard, Clode, Anderson, Keltie, Arendse, Regan, and Naik, Latha

Abstract

The Canadian Tofacitinib for Rheumatoid Arthritis Observational (CANTORAL) is the first Canadian prospective, observational study assessing tofacitinib. The objective was to assess effectiveness and safety for moderate to severe rheumatoid arthritis (RA). Coprimary and secondary outcomes are reported from an interim analysis. Patients initiating tofacitinib from October 2017 to July 2020 were enrolled from 45 Canadian sites. Coprimary outcomes (month 6) included the Clinical Disease Activity Index (CDAI)–defined low disease activity (LDA) and remission. Secondary outcomes (to month 18) included the CDAI and the 4‐variable Disease Activity Score in 28 joints (DAS28) using the erythrocyte sedimentation rate (ESR)/C‐reactive protein (CRP) level to define LDA and remission; the proportions of patients achieving mild pain (visual analog scale <20 mm), and moderate (≥30%) and substantial (≥50%) pain improvements; and the proportions of patients achieving a Health Assessment Questionnaire disability index (HAQ DI) score greater or equal to  normative values (≤0.25) and a HAQ DI score greater or equal to minimum clinically important difference (MCID) (≥0.22). Safety was assessed to month 36. Of 504 patients initiating tofacitinib, 44.4% received concomitant methotrexate. At month 6, 52.9% and 15.4% of patients were in CDAI‐defined LDA and remission, respectively; a similar proportion of patients achieved outcomes by month 3 (first post‐baseline assessment). By month 3, 27.2% and 41.7% of patients, respectively, were in DAS28‐ESR–defined LDA and DAS28‐CRP <3.2; 14.7% and 25.8% achieved DAS28‐ESR remission and DAS28‐CRP <2.6. By month 3, mild pain and moderate and substantial pain improvements occurred in 29.6%, 55.6%, and 42.9% of patients, respectively; 19.9% and 53.7% of patients achieved a HAQ DI score greater than or equal to normative values and a HAQ DI score greater than or equal to MCID, respectively. Outcomes were generally maintained to month 18. Incidence rates (events per 100 patient‐years) for treatment‐emergent adverse events (AEs), serious AEs, and discontinuations due to AEs were 126.8, 11.9, and 14.5, respectively, and AEs of special interest were infrequent. Tofacitinib was associated with early and sustained improvement in RA signs and symptoms in real‐world patients. Effectiveness and safety were consistent with the established tofacitinib clinical profile.

Published
2023
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19. Agreement Between Physician Evaluation and the Composite Response Index in Diffuse Cutaneous Systemic Sclerosis

Author

Zheng, Boyang, Wang, Mianbo, McKenna, Kerry, Shapiro, Lee, Silver, Richard, Csuka, Mary Ellen, Hoogen, Frank, Robinson, David, Pauling, John D., Hummers, Laura, Krieg, Thomas, Del Galdo, Francesco, Spiera, Robert, Jones, Niall, Khalidi, Nader, Vacca, Alessandra, Vries‐Bouwstra, Jeska K., Gordon, Jessica, Baron, Murray, Pope, Janet E., Hudson, Marie, Gyger, Geneviève, Larché, Maggie J., Masetto, Ariel, Sutton, Evelyn, Rodriguez‐Reyna, Tatiana S., Maltez, Nancy, Smith, Doug, Thorne, Carter, Ikic, Alena, Fortin, Paul R., and Fritzler, Marvin J.

Abstract

Diffuse cutaneous systemic sclerosis (SSc) is a highly heterogeneous disease. A provisionally approved Composite Response Index in diffuse cutaneous SSc (CRISS) was developed as a 1‐year outcome measure for clinical trials. Our goal was to further validate the CRISS by examining agreement between CRISS definitions for improved/non‐improved with physicians' evaluation of disease. Patient profiles from a large observational cohort were created for 50 random diffuse cutaneous SSc patients of <5 years disease duration with improved CRISS scores after 1 year and 50 with non‐improved CRISS scores. Profiles described disease features used during the initial CRISS development at baseline and at 1 year. Each profile was independently rated by 3 expert physicians. Majority opinion determined whether a patient was improved or not improved, and kappa agreement with the CRISS cutoff of 0.6 was calculated. Patients had mean ± SD disease duration of 2.2 ± 1.3 years. There was substantial agreement between the physician majority opinion about each case and the CRISS (κ = 0.76 [95% confidence interval (95% CI) 0.64–0.88]). The agreement between each individual physician opinion and the CRISS was also substantial (κ = 0.70 [95% CI 0.62–0.78]). All CRISS non‐improvers were also rated as non‐improved by physician majority; however, 12 CRISS improvers were rated as non‐improved by physicians. There was substantial agreement between the dichotomous CRISS rating and physician assessment of diffuse cutaneous SSc patients after 1 year. This supports the use of a CRISS cutoff at 0.6 for improvement versus non‐improvement, although the CRISS tended to rate more patients as improved than did physicians.

Published
2022
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20. 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

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

Published
2020
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22. Indications for and clinical procedures resulting from magnetic resonance imaging of the knee in older patients: Are we choosing wisely?

Author

Parent, Marc-Etienne, Vézina, François, Carrier, Nathalie, and Masetto, Ariel

Subjects
Aged, 80 and over, Male, Databases, Factual, Knee Joint, Research, Quebec, Middle Aged, Osteoarthritis, Knee, Unnecessary Procedures, Magnetic Resonance Imaging, Radiography, Risk Factors, Humans, Female, Longitudinal Studies, Aged, Retrospective Studies
Abstract

To analyze the indications for and clinical procedures resulting from knee magnetic resonance imaging (MRI) in older patients.We retrospectively analyzed 215 medical records of patients 50 years of age and older who had undergone a unilateral knee MRI in 2009.Centre hospitalier universitaire de Sherbrooke in Quebec.Patients 50 years of age and older who underwent a knee MRI in 2009.The main outcome measure was an invasive procedure in the same knee that underwent an MRI. Medical charts were reviewed up to 2014 for patient characteristics, MRI indication, ordering physician specialty, radiography before MRI, MRI findings, and clinical procedures resulting from the MRI.The patients' mean (SD) age was 60.6 (7.5) years. The main MRI indications were meniscopathy (148 [68.8%]) and chronic pain (92 [42.8%]). The main MRI findings were osteoarthritis (OA) (185 [86.0%]) and meniscal lesions (170 [79.1%]). Only 82 (38.1%) patients had a plain radiograph in the 24 months preceding the MRI, usually without a standing anteroposterior view. Findings on pre-MRI radiography (n = 201) demonstrated OA in 144 (71.6%) patients. Overall, 87 (40.5%) patients were seen by an orthopedic surgeon and 27 (31.0%) of these patients underwent an invasive intervention. Among the 81 patients with moderate to severe OA on MRI, 36 (44.4%) had radiographic evidence of moderate to severe OA and only 3 (3.7%) underwent arthroscopic meniscectomy.Our study reproduces the known association between OA and degenerative meniscal changes in older patients. We have found a surprising underuse of the standing anteroposterior view on radiography. Most patients in our cohort could have been appropriately diagnosed and treated based on such radiographic information, as demonstrated by pre-MRI findings, thus avoiding the MRI and subsequent evaluation by an orthopedic surgeon. Meniscectomy was rarely performed, particularly in patients with advanced OA. Educational and pragmatic measures must be emphasized to encourage the use of radiography and to limit the inappropriate use of MRI, a costly technique.

Published
2018

23. SAT0339 WHAT IS THE IMPACT OF IMAGING ON DIAGNOSTIC ASCERTAINMENT OF PATIENTS PRESENTING WITH UNDIAGNOSED BACK PAIN AND WHAT IS THE IMPACT OF CENTRAL EVALUATION? DATA FROM THE SCREENING IN AXIAL SPONDYLOARTHRITIS IN PSORIASIS, IRITIS, AND COLITIS (SASPIC) COHORT

Author

Maksymowych, Walter P., primary, Carmona, Raj, additional, Yeung, James, additional, Chan, Jon, additional, Martin, Liam, additional, Aydin, Sibel, additional, Mosher, Dianne, additional, Masetto, Ariel, additional, Keeling, Stephanie, additional, Ziouzina, Olga, additional, Rohekar, Sherry, additional, Paschke, Joel, additional, Carapellucci, Amanda, additional, and Lambert, Robert G., additional

Published
2019
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24. AB0726 WHAT IS THE IMPACT OF MRI ON THE PERFORMANCE OF THE ASAS CLASSIFICATION CRITERIA IN PATIENTS PRESENTING WITH UNDIAGNOSED BACK PAIN?

Author

Maksymowych, Walter P., primary, Carmona, Raj, additional, Yeung, James, additional, Chan, Jon, additional, Martin, Liam, additional, Aydin, Sibel, additional, Mosher, Dianne, additional, Masetto, Ariel, additional, Keeling, Stephanie, additional, Ziouzina, Olga, additional, Rohekar, Sherry, additional, Paschke, Joel, additional, Carapellucci, Amanda, additional, and Lambert, Robert G., additional

Published
2019
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25. THU0393 PERFORMANCE OF THE ASAS CLASSIFICATION CRITERIA PRESENTING WITH UNDIAGNOSED BACK PAIN? DATA FROM THE SCREENING IN AXIAL SPONDYLOARTHRITIS IN PSORIASIS, IRITIS, AND COLITIS (SASPIC) COHORT

Author

Maksymowych, Walter P, primary, Carmona, Raj, additional, Yeung, James, additional, Chan, Jon, additional, Martin, Liam, additional, Aydin, Sibel, additional, Mosher, Dianne, additional, Masetto, Ariel, additional, Keeling, Stephanie, additional, Ziouzina, Olga, additional, Rohekar, Sherry, additional, Paschke, Joel, additional, Carapellucci, Amanda, additional, and Lambert, Robert G, additional

Published
2019
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26. AB0704 EFFECTIVENESS AND SAFETY OF INFLIXIMAB AND GOLIMUMAB IN ANKYLOSING SPONDYLITIS PATIENTS FROM A PROSPECTIVE OBSERVATIONAL REGISTRY

Author

Rahman, Proton, primary, Haaland, Derek, additional, Sholter, Dalton, additional, Starr, Michael, additional, Karasik, Arthur, additional, Teo, Michelle, additional, Dixit, Sanjay, additional, Masetto, Ariel, additional, Jarosynska, Anna, additional, Boulos, Pauline, additional, Sheriff, Maqbool, additional, Stewart, Jacqueline, additional, Rampakakis, Emmanouil, additional, Miilan, Odalis asin, additional, Lehman, Allen, additional, Rachich, Meagan, additional, and Nantel, Francois, additional

Published
2019
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27. THU0392 DESCRIPTION AND PREVALENCE: OF SPONDYLOARTHRITIS IN UNSELECTED PATIENTS WITH PSORIASIS, ACUTE ANTERIOR UVEITIS, AND INFLAMMATORY BOWEL DISEASE PRESENTING WITH UNDIAGNOSED BACK PAIN

Author

Maksymowych, Walter P, primary, Carmona, Raj, additional, Yeung, James, additional, Chan, Jon, additional, Martin, Liam, additional, Aydin, Sibel, additional, Mosher, Dianne, additional, Masetto, Ariel, additional, Keeling, Stephanie, additional, Ziouzina, Olga, additional, Rohekar, Sherry, additional, Paschke, Joel, additional, Carapellucci, Amanda, additional, and Lambert, Robert G, additional

Published
2019
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28. Immunosuppressive treatment in diffuse cutaneous systemic sclerosis is associated with an improved composite response index (CRISS).

Author

Zheng, Boyang, Hudson, Marie, Wang, Mianbo, Baron, Murray, for the Canadian Scleroderma Research Group, Pope, Janet E., Gyger, Geneviève, Larché, Maggie J., Khalidi, Nader A., Masetto, Ariel, Sutton, Evelyn, Robinson, David, Rodriguez-Reyna, Tatiana S., Maltez, Nancy, Smith, Doug, Thorne, Carter, Ikic, Alena, Fortin, Paul R., and Fritzler, Marvin J.

Published
2020
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30. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort

Author

Jewett, Lisa R., primary, Kwakkenbos, Linda, additional, Carrier, Marie-Eve, additional, Malcarne, Vanessa L., additional, Harcourt, Diana, additional, Rumsey, Nichola, additional, Mayes, Maureen D., additional, Assassi, Shervin, additional, Körner, Annett, additional, Fox, Rina S., additional, Gholizadeh, Shadi, additional, Mills, Sarah D., additional, Fortune, Catherine, additional, Portales, Alexandra, additional, Thombs, Brett D., additional, Baron, Murray, additional, Bartlett, Susan J., additional, Furst, Dan, additional, Gottesman, Karen, additional, van den Hoogen, Frank, additional, Mouthon, Luc, additional, Nielson, Warren R., additional, Poiraudeau, Serge, additional, Riggs, Robert, additional, Sauve, Maureen, additional, Wigley, Fredrick, additional, Boutron, Isabelle, additional, Costa Maia, Angela, additional, El-Baalbaki, Ghassan, additional, Ells, Carolyn, additional, van den Ende, Cornelia, additional, Fligelstone, Kim, additional, Frech, Tracy, additional, Godard, Dominique, additional, Harel, Daphna, additional, Hudson, Marie, additional, Impens, Ann, additional, Jang, Yeona, additional, Johnson, Sindhu R., additional, Kennedy, Ann Tyrell, additional, Khanna, Dinesh, additional, Larche, Maggie, additional, Leite, Catarina, additional, Marra, Carlo, additional, Nielsen, Karen, additional, Poole, Janet L., additional, Pope, Janet, additional, Rodriguez Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Steele, Russell J., additional, Suarez-Almazor, Maria E., additional, Welling, Joep, additional, Wong-Rieger, Durhane, additional, Albert, Alexandra, additional, Arsenault, Guylaine, additional, Bissonnette, Lyne, additional, Boire, Gilles, additional, Bruns, Alessandra, additional, Carreira, Patricia, additional, Chung, Lorinda, additional, Dagenais, Pierre, additional, Denton, Christopher, additional, Domsic, Robyn, additional, Dunne, James V., additional, Fortin, Paul, additional, Gill, Anna, additional, Gordon, Jessica, additional, Gyger, Genevieve, additional, Herrick, Ariane L., additional, Hinchcliff, Monique, additional, Ikic, Alena, additional, Jones, Niall, additional, de B. Fernandes, Artur Jose, additional, Kafaja, Suzanne, additional, Khalidi, Nader, additional, Korman, Benjamin, additional, Liang, Patrick, additional, Manning, Joanne, additional, Masetto, Ariel, additional, Robinson, David, additional, Roux, Sophie, additional, Schiopu, Elena, additional, Smith, Doug, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Varga, John, additional, Wilcox, Pearce, additional, Delisle, Vanessa C., additional, Fedoruk, Claire, additional, Levis, Brooke, additional, Pepin, Mia R., additional, and Persmann, Jennifer, additional

Published
2017
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31. Effect of macitentan on the development of new ischemic digital ulcers in patients with systemic sclerosis: Dual-1 and Dual-2 randomized clinical trials

Author

Khanna, Dinesh, Denton, Christopher P., Merkel, Peter A., Krieg, Thomas M., Le Brun, Franck Olivier, Marr, Angelina, Papadakis, Kelly, Pope, Janet, Matucci Cerinic, Marco, Furst, Daniel E., Zochling, Jane, Stevens, Wendy, Proudman, Susanna, Feenstra, John, Youssef, Peter, Soroka, Nikolay, Tyabut, Tamara, Mikhailova, Elena Ivanovna, Rashkov, Rasho, Batalov, Anasta, Yablanski, Kiril, Keystone, Edward, Jones, Niall, Dunne, Jame, Masetto, Ariel, Calabresse, Renato Jiménez, Cabezas, Pedro Claudio Miranda, Silva, Marta Ofelia Aliste, Sariego, Imgadt Annelise Goecke, Escalente, William José Otero, Anić, Branimir, Kaliterna, Dušanka Martinović, Morović Vergles, Jadranka, Novak, Srdan, Prus, Višnja, Artuković, Marinko, Soukup, Tomaáš, Bečvař, Radim, Fojtík, Zdeněk, Mouthon, Luc, Kollert, Florian, Riemekasten, Gabriela, Lahner, Nina, Fierlbeck, Gerhard, Ahmadi Simab, Keihan, Diehm, Curt, Szücs, Gabriella, Kumánovics, Gábor, Nagy, György, Pal, Sarvajeet, Veeravalli, Sarath Chandra Mouli, Danda, Debashish, Ferri, Clodeveo, Cozzi, Franco, Ferraccioli, Gianfranco, Wiland, Piotr, Rudnicak, Lidia, Zwolak, Robert, Roszkiewicz, Jadwiga, Oleynikov, Valentin, Nikulenkova, Natalya, Lesnyak, Olga, Kaydashev, Igor, Kurytar, Oleksandr, Piura, Olena, Chopyak, Valentyna, Chatterjee, Soumya, Hsu, Vivien, Hummers, Laura, Martin, Richard, Domsic, Robyn, Schiopu, Elena, Shanahan, Joseph, Murphy, Frederik T., Kaine, Jeffrey, Davis, William, Grau, Rafael, Eimon, Alicia, Catoggio, Luis Jose, Laborde, Hugo Armando, Caeiro, Francisco, Savio, Veronica Gabriela, Amitrano, Cristina Beatriz, Vanthuyne, Marie, Zeng, Xioafeng, Zhang, Xiao, Zhu, Ping, Velásquez Franco, Carlos Jaime, Choueka, Philippe Selim Chalem, Sanchez, Patricia Julieta Vélez, Hermann, Walter, Sticherling, Michael, Steinbrink, Kerstin, Hein, Rüdiger, Aschoff, Roland, Sfikakis, Petro, Settas, Luka, Fraser, Alexander, Veale, Dougla, Balbir Gurman, Alexandra, Lidar, Merav, Litinsky, Irena, Levy, Yair, Carrillo Vazquez, Sandra Miriam, Rodriguez Reyna, Tatiana, Medrano Ramirez, Gabriel, Morales Torres, Jorge, Pacheco Tena, Cesar Francisco, Sanchez Ortiz, Adriana, Vonk, Madelon C., Stebbings, Simon, Solanki, Kamal, Steele, Richard, Ng, Kristine, Zubrzycka Sienkiewicz, Anna, Brzosko, Marek, Szepietowski, Jacek C., Hrycaj, Pawel, Da Silva, Ivone Fernandes Santo, Dos Santos, Lelita Da Conceiçao, Coelho, Paulo Jorge Clemente, Rios, Grissel, Chernykh, Tatiana, Grunina, Elena, Stanislav, Marina, Ally, Mahmood, Kalla, Asgar, Birlik, Ahmet Merih, Kovalenko, Volodymyr, Petrov, Andriy, Shevchuk, Sergiy, Stanislavchuk, Mykola, Anderson, Marina, Herrick, Ariane, Belch, Jill, Chung, Lorinda, Csuka, Mary Ellen, Frech, Tracy, Goldberg, Avram, Kahaleh, Bashar, Mayes, Maureen D., Rothfield, Naomi, Simms, Robert William, Spiera, Robert, Steen, Virgina, Varga, John, Sikes, David, Derk, Chris T., Kohen, Michael D., Ferraccioli, Gianfranco (ORCID:0000-0001-6246-2428), Khanna, Dinesh, Denton, Christopher P., Merkel, Peter A., Krieg, Thomas M., Le Brun, Franck Olivier, Marr, Angelina, Papadakis, Kelly, Pope, Janet, Matucci Cerinic, Marco, Furst, Daniel E., Zochling, Jane, Stevens, Wendy, Proudman, Susanna, Feenstra, John, Youssef, Peter, Soroka, Nikolay, Tyabut, Tamara, Mikhailova, Elena Ivanovna, Rashkov, Rasho, Batalov, Anasta, Yablanski, Kiril, Keystone, Edward, Jones, Niall, Dunne, Jame, Masetto, Ariel, Calabresse, Renato Jiménez, Cabezas, Pedro Claudio Miranda, Silva, Marta Ofelia Aliste, Sariego, Imgadt Annelise Goecke, Escalente, William José Otero, Anić, Branimir, Kaliterna, Dušanka Martinović, Morović Vergles, Jadranka, Novak, Srdan, Prus, Višnja, Artuković, Marinko, Soukup, Tomaáš, Bečvař, Radim, Fojtík, Zdeněk, Mouthon, Luc, Kollert, Florian, Riemekasten, Gabriela, Lahner, Nina, Fierlbeck, Gerhard, Ahmadi Simab, Keihan, Diehm, Curt, Szücs, Gabriella, Kumánovics, Gábor, Nagy, György, Pal, Sarvajeet, Veeravalli, Sarath Chandra Mouli, Danda, Debashish, Ferri, Clodeveo, Cozzi, Franco, Ferraccioli, Gianfranco, Wiland, Piotr, Rudnicak, Lidia, Zwolak, Robert, Roszkiewicz, Jadwiga, Oleynikov, Valentin, Nikulenkova, Natalya, Lesnyak, Olga, Kaydashev, Igor, Kurytar, Oleksandr, Piura, Olena, Chopyak, Valentyna, Chatterjee, Soumya, Hsu, Vivien, Hummers, Laura, Martin, Richard, Domsic, Robyn, Schiopu, Elena, Shanahan, Joseph, Murphy, Frederik T., Kaine, Jeffrey, Davis, William, Grau, Rafael, Eimon, Alicia, Catoggio, Luis Jose, Laborde, Hugo Armando, Caeiro, Francisco, Savio, Veronica Gabriela, Amitrano, Cristina Beatriz, Vanthuyne, Marie, Zeng, Xioafeng, Zhang, Xiao, Zhu, Ping, Velásquez Franco, Carlos Jaime, Choueka, Philippe Selim Chalem, Sanchez, Patricia Julieta Vélez, Hermann, Walter, Sticherling, Michael, Steinbrink, Kerstin, Hein, Rüdiger, Aschoff, Roland, Sfikakis, Petro, Settas, Luka, Fraser, Alexander, Veale, Dougla, Balbir Gurman, Alexandra, Lidar, Merav, Litinsky, Irena, Levy, Yair, Carrillo Vazquez, Sandra Miriam, Rodriguez Reyna, Tatiana, Medrano Ramirez, Gabriel, Morales Torres, Jorge, Pacheco Tena, Cesar Francisco, Sanchez Ortiz, Adriana, Vonk, Madelon C., Stebbings, Simon, Solanki, Kamal, Steele, Richard, Ng, Kristine, Zubrzycka Sienkiewicz, Anna, Brzosko, Marek, Szepietowski, Jacek C., Hrycaj, Pawel, Da Silva, Ivone Fernandes Santo, Dos Santos, Lelita Da Conceiçao, Coelho, Paulo Jorge Clemente, Rios, Grissel, Chernykh, Tatiana, Grunina, Elena, Stanislav, Marina, Ally, Mahmood, Kalla, Asgar, Birlik, Ahmet Merih, Kovalenko, Volodymyr, Petrov, Andriy, Shevchuk, Sergiy, Stanislavchuk, Mykola, Anderson, Marina, Herrick, Ariane, Belch, Jill, Chung, Lorinda, Csuka, Mary Ellen, Frech, Tracy, Goldberg, Avram, Kahaleh, Bashar, Mayes, Maureen D., Rothfield, Naomi, Simms, Robert William, Spiera, Robert, Steen, Virgina, Varga, John, Sikes, David, Derk, Chris T., Kohen, Michael D., and Ferraccioli, Gianfranco (ORCID:0000-0001-6246-2428)

Abstract

Importance: Digital ulcers in patients with systemic sclerosis are associated with pain and poor quality of life. Endothelin-1 promotes vasculopathy in systemic sclerosis after macitentan, an endothelin-1 blocker. Objective: To evaluate the efficacy of macitentan in reducing the number of new digital ulcers in patients with systemic sclerosis. Design, Setting, And Participants: Two international, randomized, double-blind, placebo-controlled trials (DUAL-1, DUAL-2) were conducted between January 2012 and February 2014. Participants were patients with systemic sclerosis and active digital ulcers at baseline. Target enrollment for each study was 285 patients. Interventions: Patients were randomized (1:1:1) to receive oral doses of 3 mg of macitentan, 10 mg of macitentan, or placebo once daily and stratified according to number of digital ulcers at baseline (≤3 or >3). Main Outcomes and Measures: The primary outcome for each trialwas the cumulative number of new digital ulcers from baseline to week 16. Treatment effect was expressed as the ratio between treatment groups. Results: In DUAL-1, among 289 randomized patients (mean age 51.2 years; 85.8% women), 226 completed the study. The adjusted mean number of new digital ulcers per patient over 16 weeks was 0.94 in the 3-mg macitentan group (n = 95) and 1.08 in the 10-mg macitentan group (n = 97) compared with 0.85 in the placebo group (n = 97) (absolute difference, 0.09 [95% CI, -0.37 to 0.54] for 3mg of macitentan vs placebo and 0.23 [-0.27 to 0.72] for 10 mg of macitentan vs placebo). Among 265 patients randomized in DUAL-2 (mean age 49.6 years; 81.9% women), 216 completed the study. In DUAL-2, the adjusted mean number of new digital ulcers was 1.44 in the 3-mg macitentan group (n = 88) and 1.46 in the 10-mg macitentan group (n = 88) compared with 1.21 in the placebo group (n = 89) (absolute difference, 0.23 [95% CI, -0.35 to 0.82] for 3 mg of macitentan vs placebo and 0.25 [95% CI, -0.34 to 0.84] for 10mg of macitenta

Published
2016

32. Calcinosis is associated with digital ischaemia in systemic sclerosis—a longitudinal study

Author

Baron, Murray, primary, Pope, Janet, additional, Robinson, David, additional, Jones, Niall, additional, Khalidi, Nader, additional, Docherty, Peter, additional, Kaminska, Elzbieta, additional, Masetto, Ariel, additional, Sutton, Evelyn, additional, Mathieu, Jean-Pierre, additional, Ligier, Sophie, additional, Grodzicky, Tamara, additional, LeClercq, Sharon, additional, Thorne, Carter, additional, Gyger, Geneviève, additional, Smith, Douglas, additional, Fortin, Paul R., additional, Larché, Maggie, additional, Abu-Hakima, Maysan, additional, Rodriguez-Reyna, Tatiana S., additional, Cabral-Castaneda, Antonio R., additional, Fritzler, Marvin J., additional, Wang, Mianbo, additional, and Hudson, Marie, additional

Published
2016
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33. Relationship Between Disease Characteristics and Oral Radiologic Findings in Systemic Sclerosis: Results From a Canadian Oral Health Study

Author

Baron, Murray, primary, Hudson, Marie, additional, Dagenais, Marie, additional, Macdonald, David, additional, Gyger, Geneviève, additional, El Sayegh, Tarek, additional, Pope, Janet, additional, Fontaine, Audrey, additional, Masetto, Ariel, additional, Matthews, Debora, additional, Sutton, Evelyn, additional, Thie, Norman, additional, Jones, Niall, additional, Copete, Maria, additional, Kolbinson, Dean, additional, Markland, Janet, additional, Nogueira-Filho, Getulio, additional, Robinson, David, additional, Fritzler, Marvin, additional, Wang, Mianbo, additional, and Gornitsky, Mervyn, additional

Published
2016
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34. Serum levels of 14-3-3η protein supplement C-reactive protein and rheumatoid arthritis-associated antibodies to predict clinical and radiographic outcomes in a prospective cohort of patients with recent-onset inflammatory polyarthritis

Author

Carrier, Nathalie, primary, Marotta, Anthony, additional, de Brum-Fernandes, Artur J., additional, Liang, Patrick, additional, Masetto, Ariel, additional, Ménard, Henri A., additional, Maksymowych, Walter P., additional, and Boire, Gilles, additional

Published
2016
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35. Anti-carbamylated Protein Antibody Levels Correlate with Anti-Sa (Citrullinated Vimentin) Antibody Levels in Rheumatoid Arthritis

Author

Challener, Gregory J., primary, Jones, Jonathan D., additional, Pelzek, Adam J., additional, Hamilton, B. JoNell, additional, Boire, Gilles, additional, de Brum-Fernandes, Artur José, additional, Masetto, Ariel, additional, Carrier, Nathalie, additional, Ménard, Henri A., additional, Silverman, Gregg J., additional, and Rigby, William F.C., additional

Published
2015
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36. Relationship Between Disease Characteristics and Orofacial Manifestations in Systemic Sclerosis: Canadian Systemic Sclerosis Oral Health Study III

Author

Baron, Murray, primary, Hudson, Marie, additional, Tatibouet, Solène, additional, Steele, Russell, additional, Lo, Ernest, additional, Gravel, Sabrina, additional, Gyger, Geneviève, additional, el Sayegh, Tarek, additional, Pope, Janet, additional, Fontaine, Audrey, additional, Masetto, Ariel, additional, Matthews, Debora, additional, Sutton, Evelyn, additional, Thie, Norman, additional, Jones, Niall, additional, Copete, Maria, additional, Kolbinson, Dean, additional, Markland, Janet, additional, Nogueira, Getulio, additional, Robinson, David, additional, Fritzler, Marvin, additional, and Gornitsky, Mervyn, additional

Published
2015
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37. 2013 American College of Rheumatology/European League Against Rheumatism Classification Criteria for Systemic Sclerosis Outperform the 1980 Criteria: Data From the Canadian Scleroderma Research Group

Author

Alhajeri, Hebah, primary, Hudson, Marie, additional, Fritzler, Marvin, additional, Pope, Janet, additional, Tatibouet, Solène, additional, Markland, Janet, additional, Robinson, David, additional, Jones, Niall, additional, Khalidi, Nader, additional, Docherty, Peter, additional, Kaminska, Elzbieta, additional, Masetto, Ariel, additional, Sutton, Evelyn, additional, Mathieu, Jean-Pierre, additional, Ligier, Sophie, additional, Grodzicky, Tamara, additional, LeClercq, Sharon, additional, Thorne, Carter, additional, Gyger, Geneviève, additional, Smith, Douglas, additional, Fortin, Paul R., additional, Larché, Maggie, additional, and Baron, Murray, additional

Published
2015
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40. Clinical correlates of faecal incontinence in systemic sclerosis: identifying therapeutic avenues.

Author

Richard, Nicolas, Hudson, Marie, Gyger, Geneviève, Baron, Murray, Sutton, Evelyn, Khalidi, Nader, Pope, Janet E., Carrier, Nathalie, Larché, Maggie, Albert, Alexandra, Fortin, Paul R., Thorne, Carter, and Masetto, Ariel

Subjects
FECAL incontinence -- Risk factors, CHI-squared test, CONFIDENCE intervals, FECAL incontinence, FISHER exact test, GASTROINTESTINAL diseases, LONGITUDINAL method, MEDICAL cooperation, PROBABILITY theory, QUALITY of life, QUESTIONNAIRES, REGRESSION analysis, RESEARCH, SYSTEMIC scleroderma, T-test (Statistics), DISEASE prevalence, CROSS-sectional method, SEVERITY of illness index, DATA analysis software, DESCRIPTIVE statistics, ODDS ratio, MANN Whitney U Test, DISEASE complications, PSYCHOLOGY
Abstract

Objectives. The aim was to establish the prevalence and severity of faecal incontinence (FI) in SSc, its association with other intestinal manifestations and potential predictors of FI, and its impact on quality of life. Methods. A multicentre, cross-sectional study of 298 SSc subjects followed in the Canadian Scleroderma Research Group cohort was performed using validated questionnaires: Jorge-Wexner score (an FI severity scale), Bristol stool scale (a visual scale of stool consistency) and FI Quality-of-Life scale. Constipation was defined by the Rome III criteria. Associations between the Jorge-Wexner score and other clinical variables were determined using multivariate regression analyses. Results. Eighty-one (27.2%) subjects had FI, which was mild in 37 (12.4%) and moderate to severe in 44 (14.8%). Most patients had well-formed stools, 111 (38.8%) reported constipation and 38 (13.4%) had been previously treated for small intestinal bacterial overgrowth (SIBO). Variables independently associated with FI were: loose vs well-formed stools [odds ratio (OR) = 7.01, 95% CI: 2.09, 23.51)], constipation (OR = 3.64, 95% CI: 1.61, 8.27, P = 0.002), history of SIBO (OR = 2.97, 95% CI: 1.06, 8.27) and urinary incontinence (OR = 2.45, 95% CI: 1.14, 5.27). Quality of life measured with the FI Quality-of- Life scale was inversely correlated with FI severity (correlation coefficients between -0.602 and -0.702, P < 0.001). Conclusion. FI was common and often severe in SSc. Loose stools, SIBO, constipation and urinary incontinence were strongly associated with FI. Other than targeting anorectal dysfunction, concomitant treatment of clinical correlates could lead to improvement in FI and quality of life in SSc. [ABSTRACT FROM AUTHOR]

Published
2017
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41. Serum C-X-C motif chemokine 13 is elevated in early and established rheumatoid arthritis and correlates with rheumatoid factor levels

Author

Jones, Jonathan D, primary, Hamilton, B, additional, Challener, Gregory J, additional, de Brum-Fernandes, Artur J, additional, Cossette, Pierre, additional, Liang, Patrick, additional, Masetto, Ariel, additional, Ménard, Henri A, additional, Carrier, Nathalie, additional, Boyle, David L, additional, Rosengren, Sanna, additional, Boire, Gilles, additional, and Rigby, William F C, additional

Published
2014
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42. Validation of the Social Appearance Anxiety Scale in Patients With Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Study

Author

Mills, Sarah D., Kwakkenbos, Linda, Carrier, Marie‐Eve, Gholizadeh, Shadi, Fox, Rina S., Jewett, Lisa R., Gottesman, Karen, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Baron, Murray, Bartlett, Susan J., Ells, Carolyn, Hudson, Marie, Jang, Yeona, Körner, Annett, Furst, Dan, Kafaja, Suzanne, Hoogen, Frank, Mayes, Maureen D., Assassi, Shervin, Mouthon, Luc, Nielson, Warren R., Riggs, Robert, Sauve, Maureen, Fortune, Catherine, Nielsen, Karen, Wigley, Fredrick, Boutron, Isabelle, Maia, Angela Costa, Leite, Catarina, El‐Baalbaki, Ghassan, Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Godard, Dominique, Harel, Daphna, Impens, Ann, Johnson, Sindhu R., Kennedy, Ann Tyrell, Larche, Maggie, Khalidi, Nader, Marra, Carlo, Pope, Janet, Portales, Alexandra, Rodriguez Reyna, Tatiana Sofia, Luna, David, Schouffoer, Anne A., Steele, Russell J., Gyger, Genevieve, Levis, Brooke, Suarez‐Almazor, Maria E., Welling, Joep, Wong‐Rieger, Durhane, Agard, Christian, Albert, Alexandra, Ikic, Alena, André, Marc, Smets, Perrine, Arsenault, Guylaine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Dagenais, Pierre, Fernandes, Artur Jose de B., Liang, Patrick, Masetto, Ariel, Roux, Sophie, Benmostefa, Nouria, Casadevall, Marion, Chaigne, Benjamin, Cohen, Pascal, London, Jonathan, Paule, Romain, Régent, Alexis, Terrier, Benjamin, Benzidia, Ilham, Farge‐Bancel, Dominique, Hij, Adrian, Berthier, Sabine, Carreira, Patricia, Fare, Regina, Martin, Maria, Melchor, Sheila, Rodriguez, Esther, Chung, Lorinda, Denton, Christopher, Gill, Anna, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Gordon, Jessica, Spiera, Robert, Granel‐Rey, Brigitte, Grange, Claire, Hachulla, Eric, Hatron, Pierre‐Yves, Lambert, Marc, Launay, David, Sobanski, Vincent, Herrick, Ariane L., Hinchcliff, Monique, Korman, Benjamin, Varga, John, Jones, Niall, Manning, Joanne, Martin, Thierry, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Robinson, David, Smith, Doug, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Cumin, Julie, Pepin, Mia R., and Turner, Kimberly

Abstract

Systemic sclerosis (SSc) is an autoimmune disease that can cause disfiguring changes in appearance. This study examined the structural validity, internal consistency reliability, convergent validity, and measurement equivalence of the Social Appearance Anxiety Scale (SAAS) across SSc disease subtypes. Patients enrolled in the Scleroderma Patient‐centered Intervention Network Cohort completed the SAASand measures of appearance‐related concerns and psychological distress. Confirmatory factor analysis (CFA) was used to examine the structural validity of the SAAS. Multiple‐group CFAwas used to determine whether SAASscores can be compared across patients with limited and diffuse disease subtypes. Cronbach's alpha was used to examine internal consistency reliability. Correlations of SAASscores with measures of body image dissatisfaction, fear of negative evaluation, social anxiety, and depression were used to examine convergent validity. SAASscores were hypothesized to be positively associated with all convergent validity measures, with correlations significant and moderate to large in size. A total of 938 patients with SSc were included. CFAsupported a 1‐factor structure (Comparative Fit Index 0.92, Standardized Root Mean Residual 0.04, and Root Mean Square Error of Approximation 0.08), and multiple‐group CFAindicated that the scalar invariance model best fit the data. Internal consistency reliability was good in the total sample (α = 0.96) and in disease subgroups. Overall, evidence of convergent validity was found with measures of body image dissatisfaction, fear of negative evaluation, social anxiety, and depression. The SAAScan be reliably and validly used to assess fear of appearance evaluation in patients with SSc, and SAASscores can be meaningfully compared across disease subtypes.

Published
2018
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45. High prevalence of occult left heart disease in scleroderma-pulmonary hypertension

Author

Fox, Benjamin D., primary, Shimony, Avi, additional, Langleben, David, additional, Hirsch, Andrew, additional, Rudski, Lawrence, additional, Schlesinger, Robert, additional, Eisenberg, Mark J., additional, Joyal, Dominique, additional, Hudson, Marie, additional, Boutet, Kim, additional, Serban, Alexandrina, additional, Masetto, Ariel, additional, and Baron, Murray, additional

Published
2012
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46. Using Optimal Test Assembly Methods for Shortening Patient‐Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scale‐6: A Scleroderma Patient‐Centered Intervention Network Cohort Study

Author

Levis, Alexander W., Harel, Daphna, Kwakkenbos, Linda, Carrier, Marie‐Eve, Mouthon, Luc, Poiraudeau, Serge, Bartlett, Susan J., Khanna, Dinesh, Malcarne, Vanessa L., Sauve, Maureen, van den Ende, Cornelia H. M., Poole, Janet L., Schouffoer, Anne A., Welling, Joep, Thombs, Brett D., Baron, Murray, Ells, Carolyn, Jang, Yeona, Steele, Russell J., Furst, Dan, Kafaja, Suzanne, Gottesman, Karen, van den Hoogen, Frank, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., Riggs, Robert, Wigley, Fredrick, Boutron, Isabelle, Maia, Angela Costa, Leite, Catarina, El‐Baalbaki, Ghassan, Persmann, Jennifer, Fligelstone, Kim, Fortune, Catherine, Nielsen, Karen, Frech, Tracy, Godard, Dominique, Hudson, Marie, Gyger, Genevieve, Delisle, Vanessa C., Jewitt, Lisa R., Levis, Brooke, Milette, Katherine, Impens, Ann, Johnson, Sindhu R., Kennedy, Ann Tyrell, Larche, Maggie, Khalidi, Nader, Marra, Carlo, Pope, Janet, Portales, Alexandra, Reyna, Tatiana Sofia Rodriguez, Suarez‐Almazor, Maria E., Wong‐Rieger, Durhane, Albert, Alexandra, Fortin, Paul, Ikic, Alena, Arsenault, Guylaine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Dagenais, Pierre, Fernandes, Artur Jose de B., Liang, Patrick, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Chung, Lorinda, Denton, Christopher, Gill, Anna, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Gordon, Jessica, Spiera, Robert, Herrick, Ariane L., Hinchcliff, Monique, Korman, Benjamin, Varga, John, Jones, Niall, Manning, Joanne, Robinson, David, Schiopu, Elena, Smith, Doug, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Fedoruk, Claire, Pepin, Mia R., Fox, Rina S., Gholizadeh, Shadi, and Mills, Sarah D.

Abstract

To develop and validate a short form of the Cochin Hand Function Scale (CHFS), which measures hand disability, for use in systemic sclerosis, using objective criteria and reproducible techniques. Responses on the 18‐item CHFS were obtained from English‐speaking patients enrolled in the Scleroderma Patient‐Centered Intervention Network Cohort. CHFS unidimensionality was verified using confirmatory factor analysis, and an item response theory model was fit to CHFS items. Optimal test assembly (OTA) methods identified a maximally precise short form for each possible form length between 1 and 17 items. The final short form selected was the form with the least number of items that maintained statistically equivalent convergent validity, compared to the full‐length CHFS, with the Health Assessment Questionnaire (HAQ) disability index (DI) and the physical function domain of the 29‐item Patient‐Reported Outcomes Measurement Information System (PROMIS‐29). There were 601 patients included. A 6‐item short form of the CHFS (CHFS‐6) was selected. The CHFS‐6 had a Cronbach's alpha of 0.93. Correlations of the CHFS‐6 summed score with HAQ DI (r = 0.79) and PROMIS‐29 physical function (r = −0.54) were statistically equivalent to the CHFS (r = 0.81 and r = −0.56). The correlation with the full CHFS was high (r = 0.98). The OTA procedure generated a valid short form of the CHFS with minimal loss of information compared to the full‐length form. The OTA method used was based on objective, prespecified criteria, but should be further studied for viability as a general procedure for shortening patient‐reported outcome measures in health research.

Published
2016
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47. Validation of the Self‐Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient‐Centered Intervention Network Cohort Study

Author

Riehm, Kira E., Kwakkenbos, Linda, Carrier, Marie‐Eve, Bartlett, Susan J., Malcarne, Vanessa L., Mouthon, Luc, Nielson, Warren R., Poiraudeau, Serge, Nielsen, Karen, Baron, Murray, Frech, Tracy, Hudson, Marie, Pope, Janet, Sauve, Maureen, Suarez‐Almazor, Maria E., Wigley, Fredrick M., Thombs, Brett D., Furst, Dan, Gottesman, Karen, Mayes, Maureen D., Riggs, Robert, van den Hoogen, Frank, Assassi, Shervin, Boutron, Isabelle, Costa Maia, Angela, El‐Baalbaki, Ghassan, Ells, Carolyn, van den Ende, Cornelia H. M., Fligelstone, Kim, Fortune, Catherine, Godard, Dominique, Harel, Daphna, Impens, Ann, Jang, Yeona, Johnson, Sindhu R., Tyrell Kennedy, Ann, Körner, Annett, Leite, Catarina, Marra, Carlo, Poole, Janet L., Portales, Alexandra, Sofia Rodriguez Reyna, Tatiana, Schouffoer, Anne A., Steele, Russell J., Welling, Joep, Wong‐Rieger, Durhane, Albert, Alexandra, Arsenault, Guylaine, Carreira, Patricia, Chung, Lorinda, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dunne, James V., Fortin, Paul, Gordon, Jessica, Gyger, Genevieve, Herrick, Ariane, Hinchcliff, Monique, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Korman, Benjamin, Larche, Maggie, Liang, Patrick, Masetto, Ariel, Robinson, David, Roux, Sophie, Schiopu, Elena, Smith, Doug, Spiera, Robert, Steen, Virginia, Thorne, Carter, Varga, John, Wilcox, Pearce, Delisle, Vanessa C., Fox, Rina S., Gholizadeh, Shadi, Fedoruk, Claire, Jewett, Lisa R., Levis, Brooke, Milette, Katherine, Pepin, Mia R., and Mills, Sarah D.

Abstract

Self‐management programs for patients with chronic illnesses, including rheumatic diseases, seek to enhance self‐efficacy for performing health management behaviors. No measure of self‐efficacy has been validated for patients with systemic sclerosis (SSc; scleroderma). The objective of this study was to assess the validity and internal consistency reliability of the Self‐Efficacy for Managing Chronic Disease (SEMCD) scale in SSc. English‐speaking SSc patients enrolled in the Scleroderma Patient‐centered Intervention Network Cohort who completed the SEMCD scale at their baseline assessment between March 2014 and June 2015 were included. Patients were enrolled from 21 sites in Canada, the US, and the UK. Confirmatory factor analysis (CFA) was used to evaluate the factor structure of the SEMCD scale. Cronbach's alpha was calculated to assess internal consistency reliability. Hypotheses on the direction and magnitude of Pearson's correlations with psychological and physical outcome measures were formulated and tested to examine convergent validity. A total of 553 patients were included. CFA supported the single‐factor structure of the SEMCD scale (Tucker Lewis Index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.10). Internal consistency was high (α = 0.93), and correlations with measures of psychological and physical functioning were moderate to large (|r| = 0.48–0.67, P< 0.001), confirming study hypotheses. Scores from the SEMCD scale are valid for measuring self‐efficacy in patients with SSc, and results support using the scale as an outcome measure to evaluate the effectiveness of self‐management programs in SSc.

Published
2016
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48. Changes at Presentation in Patients With Early Rheumatoid Arthritis: A 24-Year Study of the Early Undifferentiated Polyarthritis (EUPA) Cohort.

Author

Carrier N, Roux S, Masetto A, de Brum-Fernandes AJ, Liang P, Maoui M, and Boire G

Abstract

Objective: To analyze changes in baseline characteristics of patients with very early rheumatoid arthritis (RA) over 24 years in the Early Undifferentiated Polyarthritis (EUPA) cohort., Methods: Consecutive patients with recent-onset polyarthritis fulfilling RA classification criteria recruited in EUPA were assessed at baseline. Three successive periods were defined: (1) prior to the general availability of biologics (1998-2004; 245 patients), (2) prior to the implantation of the 2010 classification criteria (2005-2010; 266 patients), and (3) the most recent decade (2011-2022; 329 patients)., Results: At baseline, demographics, BMI, swollen and tender joint counts, proportion fulfilling 2010 American College of Rheumatology/European Alliance of Associations for Rheumatology criteria, modified Health Assessment Questionnaire, shared epitope status, patient-reported outcomes except pain, and patient global assessment of disease activity remained stable over the 3 periods. Despite a marked decrease in active smoking (22.2% to 12.1%), prevalence of cardiovascular comorbidities and prior cancer increased. Although duration of symptoms increased from a median of 2.9 to 4.1 months, decreases were seen in seropositivity (53.9% to 42.2%) and C-reactive protein beginning in the 2005-2010 period. A large decrease in erosive status (Sharp/van der Heijde erosion score ≥ 5; 18.3% to 9.4%) was only observed after 2011; this decrease occurred mostly in seronegative patients. Use of disease-modifying antirheumatic drugs prior to inclusion remained low and stable (25.7%), but use of oral corticosteroids increased (18% to 33.4%)., Conclusion: Baseline characteristics of patients with RA evolved since 2005 toward less seropositivity and lower blood inflammation but with more comorbidities. Milder erosive damage at baseline became evident only since 2011, mostly in seronegative patients. These changes at baseline, before any intervention, suggest ongoing secular trends that may favorably affect outcomes in patients with early RA.

Published
2024
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49. Features of Axial Spondyloarthritis in Two Multicenter Cohorts of Patients with Psoriasis, Uveitis, and Colitis Presenting with Undiagnosed Back Pain.

Author

Maksymowych WP, Carmona R, Weber U, Aydin SZ, Yeung J, Reis J, Masetto A, Rohekar S, Mosher D, Zouzina O, Martin L, Keeling SO, Paschke J, Dadashova R, Carapellucci A, Wichuk S, Lambert RG, and Chan J

Abstract

Objective: We aimed to assess: 1. The frequency of axial spondyloarthritis (axSpA) according to extra-articular presentation and HLA-B27 status; 2. Clinical and imaging features that distinguish axSpA from non-axSpA; 3. The impact of MRI on diagnosis and classification of axSpA., Methods: The Screening in Axial Spondyloarthritis in Psoriasis, Iritis, Colitis, (SASPIC) study enrolled patients in two multicenter cohorts. Consecutive patients with undiagnosed chronic back pain attending dermatology, ophthalmology, and gastroenterology clinics with PsO, AAU, or IBD, were referred to a local rheumatologist with special expertise in axSpA for a structured diagnostic evaluation. The primary outcome was proportion of patients diagnosed with axSpA by final global evaluation., Results: Frequency of axSpA was 46.7%, 61.6%, and 46.8% in SASPIC-1 cases (n=212) and 23.5%, 57.9%, and 23.3% in SASPIC-2 cases (n=151) with PsO, AAU, or IBD, respectively. Among B27 positives, axSpA was diagnosed in 70%, 74.5%, and 66.7% in SASPIC-1, and in 71.4%, 87.8%, and 55.6% in SASPIC-2 in patients with PsO, AAU, or IBD, respectively. All musculoskeletal clinical features were non-discriminatory. MRI was indicative of axSpA in 60-80% of patients and MRI in all patients (SASPIC-2) versus on-demand (SASPIC-1) led to 25% fewer diagnoses of axSpA in HLA B27 negatives with PsO or IBD. Performance of the ASAS classification criteria was greater with routine MRI (SASPIC-2) though sensitivity was lower than previously reported., Conclusions: Optimal management of patients presenting with PsO, AAU, IBD, and undiagnosed chronic back pain should include referral to a rheumatologist. Conducting MRI in all patients enhances diagnostic accuracy., (This article is protected by copyright. All rights reserved.)

Published
2024
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50. Which advanced treatment should be used following the failure of a first-line anti-TNF in patients with rheumatoid arthritis? 15 years of evidence from the Quebec registry RHUMADATA.

Author

Choquette D, Haraoui B, Movahedi M, Bessette L, Sauvageau LC, Ferdinand I, Joly-Chevrier M, Masetto A, Massicotte F, Nadon V, Pelletier JP, Raynauld JP, Sauvageau D, Villeneuve É, and Coupal L

Abstract

Background: Since 2000, advanced therapies (AT) have revolutionized the treatment of moderate to severe rheumatoid arthritis (RA). Randomized control trials as well as observational studies together with medication availability often determine second-line choices after the failure of first Tumor Necrosis Factor inhibitors (TNFi). This led to the observation that specific sequences provide better long-term effectiveness. We investigated which alternative medication offers the best long-term sustainability following the first TNFi failure in RA., Methods: Data were extracted from RHUMADATA from January2007. Patients were followed until treatment discontinuation, loss to follow-up, or November 25, 2022. Kaplan-Meier and Cox regression models were used to compare discontinuation between groups. Missing data were imputed, and propensity scores were computed to reduce potential attribution bias. Complete, unadjusted, and propensity score-adjusted imputed data analyses were produced., Results: 611 patients (320 treated with a TNFi and 291 treated with molecules having another mechanism of action (OMA)) were included. The mean age at diagnosis was 44.5 and 43.9 years, respectively. The median retention was 2.84 and 4.48 years for TNFi and OMAs groups. Using multivariable analysis, the discontinuation rate of the OMA group was significantly lower than TNFi (adjHR: 0.65; 95% CI: 0.44-0.94). This remained true for the PS-adjusted MI Cox models. In a stratified analysis, rituximab (adjHR: 0.39; 95% CI: 0.18-0.84) had better retention than TNFi after adjusting for patient characteristics., Conclusion: Switching to an OMA, especially rituximab, in patients with failure to a first TNFi appears to be the best strategy as a second line of therapy., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Published
2024
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