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1. The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial

Author

Carrier, Marie-Eve, Kwakkenbos, Linda, Nielson, Warren R, Fedoruk, Claire, Nielsen, Karen, Milette, Katherine, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Hummers, Laura, Johnson, Sindhu R, Piotrowski, Pamela, Jewett, Lisa, Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Turner, Kimberly A, Cumin, Julie, Welling, Joep, Fortune, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodríguez-Reyna, Tatiana S, Hudson, Marie, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E, Bartlett, Susan J, Malcarne, Vanessa L, Mayes, Maureen D, Boutron, Isabelle, Mouthon, Luc, Wigley, Fredrick, and Thombs, Brett D

Subjects
Medicine, Computer applications to medicine. Medical informatics, R858-859.7
Abstract

BackgroundSystemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (HRQoL). Self-management programs are known to increase self-efficacy for disease management in many chronic diseases. The Scleroderma Patient-centered Intervention Network (SPIN) developed a Web-based self-management program (SPIN self-management; SPIN-SELF) to increase self-efficacy for disease management and to improve HRQoL for patients with SSc. ObjectiveThe proposed study aims to assess the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF program by evaluating the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-SELF program. MethodsThe SPIN-SELF feasibility trial will be conducted via the SPIN Cohort. The SPIN Cohort was developed as a framework for embedded pragmatic trials using the cohort multiple RCT design. In total, 40 English-speaking SPIN Cohort participants with low disease management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale score ≤7), who have indicated interest in using a Web-based self-management program, will be randomized with a 3:2 ratio into the SPIN-SELF program or usual care for 3 months. Feasibility outcomes include trial implementation processes, required resources and management, scientific aspects, and patient acceptability and usage of the SPIN-SELF program. ResultsEnrollment of the 40 participants occurred between July 5, 2019, and July 27, 2019. By November 25, 2019, data collection of trial outcomes was completed. Data analysis is underway, and results are expected to be published in 2020. ConclusionsThe SPIN-SELF program is a self-help tool that may improve disease-management self-efficacy and improve HRQoL in patients with SSc. The SPIN-SELF feasibility trial will ensure that trial methodology is robust, feasible, and consistent with trial participant expectations. The results will guide adjustments that need to be implemented before undertaking a full-scale RCT of the SPIN-SELF program. International Registered Report Identifier (IRRID)DERR1-10.2196/16799

Published
2020
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2. Association of vocational interventions and work-related factors with disease and work outcomes in people with RMDs: A systematic review

Author

Wieczorek, Maud, Verstappen, Suzanne MM., Putrik, Polina, Gwinnutt, James M., Balanescu, Andra, Bischoff-Ferrari, Heike A., Boonen, Annelies, Cavalli, Giulio, de Souza, Savia, de Thurah, Annette, Dorner, Thomas E., Moe, Rikke Helene, Rodríguez-Carrio, Javier, Silva-Fernández, Lucía, Stamm, Tanja, Walker-Bone, Karen, Welling, Joep, Zlatković-Švenda, Mirjana, and Guillemin, Francis

Published
2023
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3. 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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4. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program

Author

Kwakkenbos, Linda, Østbø, Nora, Carrier, Marie-Eve, Nielson, Warren R., Fedoruk, Claire, Levis, Brooke, Henry, Richard S., Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Tao, Lydia, Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortuné, Catherine, Leite, Catarina, Gottesman, Karen, Sauvé, Maureen, Reyna, Tatiana Sofia Rodriguez, Hudson, Marie, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Bartlett, Susan J., Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Published
2022
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5. Randomized controlled trial of an internet-based self-guided hand exercise program to improve hand function in people with systemic sclerosis: the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND) trial

Author

Kwakkenbos, Linda, Carrier, Marie-Eve, Welling, Joep, Levis, Brooke, Levis, Alexander W., Sauve, Maureen, Turner, Kimberly A., Tao, Lydia, Aguila, Kylene, Carboni-Jiménez, Andrea, Cañedo-Ayala, Mara, Harb, Sami, van den Ende, Cornelia, Hudson, Marie, van Breda, Ward, Nguyen, Christelle, Boutron, Isabelle, Rannou, François, Thombs, Brett D., and Mouthon, Luc

Published
2022
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6. 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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7. Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study

Author

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

Published
2021
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8. Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study

Author

Culos-Reed, Nicole, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Patten, Scott, Varga, John, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Rice, Danielle, Dyas, Laura, Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Wu, Yin, Kwakkenbos, Linda, Henry, Richard S., Tao, Lydia, Harb, Sami, Bourgeault, Angelica, Carrier, Marie-Eve, Levis, Brooke, Sun, Ying, Bhandari, Parash Mani, Carboni-Jiménez, Andrea, Gagarine, Maria, He, Chen, Krishnan, Ankur, Negeri, Zelalem F., Neupane, Dipika, Mouthon, Luc, Bartlett, Susan J., Benedetti, Andrea, and Thombs, Brett D.

Published
2020
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9. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Author

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

Published
2020
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10. 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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12. 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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13. Development of EULAR recommendations for the reporting of clinical trial extension studies in rheumatology

Author

Buch, Maya H, Silva-Fernandez, Lucia, Carmona, Loreto, Aletaha, Daniel, Christensen, Robin, Combe, Bernard, Emery, Paul, Ferraccioli, Gianfranco, Guillemin, Francis, Kvien, Tore K, Landewe, Robert, Pavelka, Karel, Saag, Kenneth, Smolen, Josef S, Symmons, Deborah, van der Heijde, Désirée, Welling, Joep, Wells, George, Westhovens, Rene, Zink, Angela, and Boers, Maarten

Published
2015
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14. 2021 EULAR recommendations regarding lifestyle behaviours and work participation to prevent progression of rheumatic and musculoskeletal diseases.

Author

Gwinnutt, James M., Wieczorek, Maud, Balanescu, Andra, Bischoff-Ferrari, Heike A., Boonen, Annelies, Cavalli, Giulio, de Souza, Savia, de Thurah, Annette, Dorner, Thomas E., Moe, Rikke Helene, Putrik, Polina, Rodríguez-Carrio, Javier, Silva-Fernández, Lucía, Stamm, Tanja, Walker-Bone, Karen, Welling, Joep, Zlatković-Švenda, Mirjana I., Guillemin, Francis, and Verstappen, Suzanne M. M.

Published
2023
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15. Effects of diet on the outcomes of rheumatic and musculoskeletal diseases (RMDs): systematic review and meta-analyses informing the 2021 EULAR recommendations for lifestyle improvements in people with RMDs.

Author

Gwinnutt, James M., Wieczorek, Maud, Rodríguez-Carrio, Javier, Balanescu, Andra, Bischoff-Ferrari, Heike A., Boonen, Annelies, Cavalli, Giulio, de Souza, Savia, de Thurah, Annette, Dorner, Thomas E., Moe, Rikke Helene, Putrik, Polina, Silva-Fernández, Lucía, Stamm, Tanja, Walker-Bone, Karen, Welling, Joep, Zlatković-Švenda, Mirjana, Guillemin, Francis, and Verstappen, Suzanne M. M.

Published
2022
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16. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND).

Author

Kwakkenbos, Linda, Carrier, Marie-Eve, Welling, Joep, Turner, Kimberly A., Cumin, Julie, Pépin, Mia, van den Ende, Cornelia, Schouffoer, Anne A., Hudson, Marie, van Breda, Ward, Sauve, Maureen, Mayes, Maureen D., Malcarne, Vanessa L., Nielson, Warren R., Nguyen, Christelle, Boutron, Isabelle, Rannou, François, Thombs, Brett D., and Mouthon, Luc

Subjects
RANDOMIZED controlled trials, ONLINE education, SEMI-structured interviews, SATISFACTION
Abstract

Purpose. The Scleroderma Patient-centered Intervention Network (SPIN) online hand exercise program (SPIN-HAND), is an online self-help program of hand exercises designed to improve hand function for people with scleroderma. The objective of this feasibility trial was to evaluate aspects of feasibility for conducting a full-scale randomized controlled trial of the SPIN-HAND program. Materials and Methods. The feasibility trial was embedded in the SPIN cohort and utilized the cohort multiple randomized controlled trial (cmRCT) design. In the cmRCT design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about trials conducted using the cohort. When trials were conducted in the cohort, participants randomized to the intervention were informed and consented to access the intervention. Participants randomized to control were not informed that they have not received an intervention. All participants eligible and randomized to participate in the trial were included in analyses on an intent-to-treat basis. Cohort participants with a Cochin Hand Function Scale score ≥ 3/90 and an interest in using an online hand-exercise intervention were randomized (1:1 ratio) to be offered as usual care plus the SPINHAND Program or usual care for 3 months. User satisfaction was assessed with semistructured interviews. Results. Of the 40 randomized participants, 24 were allocated to SPIN-HAND and 16 to usual care. Of 24 participants randomized to be offered SPIN-HAND, 15 (63%) consented to use the program. Usage of SPIN-HAND content among the 15 participants who consented to use the program was low; only five (33%) logged in more than twice. Participants found the content relevant and easy to understand (satisfaction rating 8.5/10, N = 6). Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly. The required technical support was minimal. Conclusions. Trial methodology functioned as designed, and the SPIN-HAND Program was feasibly delivered; however, the acceptance of the offer and use of program content among accepters were low. Adjustments to information provided to potential participants will be implemented in the full-scale SPIN-HAND trial to attempt to increase offer acceptance. [ABSTRACT FROM AUTHOR]

Published
2022
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17. Mental Health Care Use and Associated Factors in Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Study.

Author

Becetti, Karima, Nguyen, Joseph T., Kwakkenbos, Linda, Carrier, Marie‐Eve, Tao, Lydia, Gordon, Jessica K., Mancuso, Carol A., Welling, Joep, Mouthon, Luc, Bartlett, Susan J., Malcarne, Vanessa L., Thombs, Brett D., and Spiera, Robert F.

Subjects
MENTAL health services, BODY image, MEDICAL care use, SYSTEMIC scleroderma, MENTAL health personnel, GENERAL practitioners, COHORT analysis, DISABILITY retirement
Abstract

Objective: Systemic sclerosis (SSc) has significant psychosocial implications. We aimed to evaluate the proportion of participants in a large international SSc cohort who used mental health services in a 3‐month period and to evaluate demographic, psychological, and disease‐specific factors associated with use. Methods: Baseline data of participants enrolled in the Scleroderma Patient‐Centered Intervention Network Cohort were analyzed. We determined the proportion that used mental health services and the source of services in the 3 months prior to enrollment. Multivariable logistic regression was used to identify variables associated with service use. Results: Of the 2319 participants included in the analysis, 417 (18%) used mental health services in the 3 months prior to enrollment. General practitioners were the most common mental health service providers (59%), followed by psychologists (25%) and psychiatrists (19%). In multivariable analysis, mental health service use was independently associated with higher education (odds ratio [OR] 1.07, 95% confidence interval [CI] 1.03‐1.11), smoking (OR 1.06, 95% CI 1.02‐1.11), being retired (OR 0.60, 95% CI 0.38‐0.93), having limited SSc (OR 1.39, 95% CI 1.02‐1.89), and having higher anxiety symptom scores (OR 1.04, 95% CI 1.03‐1.06) and lower self‐efficacy scores (OR 0.90, 95% CI 0.83‐0.97). Variables not significantly associated included age, race, disease manifestations, depression symptom scores, and body image distress. Conclusion: About 18% of participants in a large international cohort received mental health services in a 3‐month period, of whom the majority received these services from a general practitioner. [ABSTRACT FROM AUTHOR]

Published
2022
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18. Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews.

Author

Hoffmann-Vold, Anna-Maria, Bendstrup, Elisabeth, Dimitroulas, Theodoros, Hesselstrand, Roger, Morais, Antonio, Peltomaa, Ritva, Smith, Vanessa, Welling, Joep, Vonk, Madelon C, and Wuyts, Wim A

Subjects
SOCIAL support, PROFESSIONS, ATTITUDE (Psychology), RESEARCH methodology, SYSTEMIC scleroderma, INTERSTITIAL lung diseases, MEDICAL personnel, INTERVIEWING, PATIENTS' attitudes, QUALITATIVE research, HEALTH care teams, DESCRIPTIVE statistics, NEEDS assessment, PATIENT education
Abstract

Objectives Interstitial lung disease is frequent in SSc (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients. Methods Semi-structured qualitative interviews conducted in eight European countries looked at HCP (n  = 95) and patient perspectives (n  = 47) using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored. Results (i) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, and delayed and/or inappropriate referral. (ii) The diagnostic phase is in most countries coordinated by rheumatologists, who are also the main point of care. Depending on the local health system, organization of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (iii) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, and paramedical  and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD. Conclusion Lack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc-ILD patients. [ABSTRACT FROM AUTHOR]

Published
2021
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20. Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patientcentered Intervention Network (SPIN) ohort study.

Author

Kwakkenbos, Linda, Cumin, Julie, Carrier, Marie-Eve, Bartlett, Susan J., Malcarne, Vanessa L., Mouthon, Luc, Nielson, Warren R., Rannou, François, Welling, Joep, and Thombs, Brett D.

Abstract

Objectives The Scleroderma Patient-centered Intervention Network (SPIN) Cohort uses the cohort multiple randomised controlled trial design to embed trials of online self-care interventions for people living with systemic sclerosis (SSc; scleroderma). To offer interventions to patients interested in using them, participants complete signalling items that query about the likelihood that patients would agree to participate in nine different hypothetical online programmes addressing common SScrelated problems. It is not known what factors influence patient-reported interest in participating in a particular online intervention and if intervention-specific signalling questions provide unique information or replicate broader characteristics, such as overall willingness to participate or self-efficacy. This study assessed factors that explain responses to intervention-specific signalling items. Design Cross-sectional survey. Setting SPIN Cohort participants enrolled at 42 centres from Canada, the USA, the UK, France, Spain and Mexico who completed study questionnaires from March 2014 to January 2018 were included. Measures Demographic and disease characteristics, self-efficacy and symptoms related to each specific intervention were completed in addition to signalling items. General likelihood of using interventions was calculating by taking the mean score of the remaining signalling questions. Participants 1060 participants with complete baseline data were included in the analyses. Results For all individual signalling questions, controlling for other variables, the mean of the remaining signalling questions was the strongest predictor (standardised regression coefficient β from 0.61 (sleep) to 0.80 (selfmanagement)). Smaller, but statistically significant, associations were found with the symptom associated with the respective signalling question and with general self-efficacy for 7 of 9 signalling questions. Conclusions The main factor associated with patients’ interest in participating in a disease-specific online selfcare intervention is their general interest in participating in online interventions. Factors that may influence this general interest should be explored and taken into consideration when inviting patients to try online interventions. [ABSTRACT FROM AUTHOR]

Published
2019
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21. Exercise habits and factors associated with exercise in systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study.

Author

Azar, Marleine, Rice, Danielle B., Kwakkenbos, Linda, Carrier, Marie-Eve, Shrier, Ian, Bartlett, Susan J., Hudson, Marie, Mouthon, Luc, Poiraudeau, Serge, van den Ende, Cornelia H. M., Johnson, Sindhu R., Rodriguez Reyna, Tatiana Sofia, Schouffoer, Anne A., Welling, Joep, Thombs, Brett D., and SPIN investigators

Subjects
STATISTICAL correlation, EXERCISE, HABIT, LONGITUDINAL method, QUESTIONNAIRES, RESEARCH, RESEARCH funding, SYSTEMIC scleroderma, T-test (Statistics), DATA analysis software, DESCRIPTIVE statistics
Abstract

Objective: Exercise is associated with improved health in many medical conditions. Little is known about the exercise habits of people with systemic sclerosis (SSc, or scleroderma). This study assessed the proportion of individuals with SSc who exercise and associations of demographic and disease variables with exercise. Additionally, the weekly amount of time spent exercising and the types of exercise performed were assessed among patients exercising. Methods: The sample consisted of adult participants with SSc enrolled in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort who completed baseline questionnaires from March 2014 through August 2015. Baseline questionnaires included questions on exercise habits, physician-reported medical characteristics, self-report demographic characteristics, the Health Assessment Questionnaire-Disability Index, Patient Health Questionnaire-9, and Patient-Reported Outcomes Measurement Information System-29. Results: Of 752 patients, 389 (51.7%) reported presently engaging in exercise, and these patients exercised on average 4.7 h [standard deviation (SD) = 2.8] per week. Among patients who reported exercising, walking was most commonly reported (n = 295, 75.8%). In bivariate analyses, present exercise was associated with more education, lower body mass index, some (versus no) alcohol consumption, non-smoking, limited/sine disease subtype, absence of skin thickening, lower disability, higher physical function, lower symptoms of anxiety and depression, less fatigue, lower sleep disturbance, higher ability to participate in social roles and activities, and less pain. Conclusions: Approximately half of SSc patients reported that they are currently exercising with walking being the most common form of exercise. Understanding exercise patterns and factors associated with exercise will help better inform intervention programs to support exercise for patients with SSc. Implications for rehabilitation: Systemic sclerosis is a rare autoimmune rheumatic disease associated with great morbidity and highly diverse presentation. Approximately half of people with both limited and diffuse systemic sclerosis report exercising. Most exercisers walk, but patients engage in a wide variety of exercise-related activities. Individually designed exercise programs are most likely to support and encourage exercise in patients with diverse disease manifestations. [ABSTRACT FROM AUTHOR]

Published
2018
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22. 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., and the Scleroderma Patient-Centered Intervention Network Investigators, and the Scleroderma Patient-Centered Intervention Network Investigators

Subjects
COMPARATIVE studies, FUNCTIONAL assessment, FACTOR analysis, HAND, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, HEALTH outcome assessment, QUESTIONNAIRES, RESEARCH, RESEARCH evaluation, RESEARCH funding, SYSTEMIC scleroderma, EVALUATION research, SEVERITY of illness index
Abstract

Objective: 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.Methods: 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).Results: 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).Conclusion: 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. [ABSTRACT FROM AUTHOR]

Published
2016
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