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2. 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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6. Moderators of Loneliness Trajectories in People with Systemic Sclerosis During the COVID-19 Pandemic: A SPIN COVID-19 Cohort Longitudinal Study

Author

Rapoport, Chelsea S., Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie-Eve, Henry, Richard S., Levis, Brooke, Bartlett, Susan J., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie-Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Richard, Michelle, Worron-Sauvé, Maureen, Benedetti, Andrea, Roesch, Scott C., Thombs, Brett D., and Malcarne, Vanessa L.

Published
2024
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11. 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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13. The association of resilience and positive mental health in systemic sclerosis: A Scleroderma Patient-centered Intervention Network (SPIN) cohort cross-sectional study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie-Eve, Kwakkenbos, Linda, Virgili-Gervais, Gabrielle, Wojeck, Robyn K., Wurz, Amanda, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie-Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Benedetti, Andrea, and Thombs, Brett D.

Published
2024
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17. Validation of the 'knowledge about melanoma early detection scale' in a sample of melanoma survivors

Author

Coroiu, Adina, Moran, Chelsea, Kwakkenbos, Linda, Thombs, Brett D., and Körner, Annett

Subjects
Self-examination, Medical -- Methods, Health literacy -- Evaluation, Psychological tests -- Evaluation, Melanoma -- Diagnosis -- Patient outcomes, Psychology and mental health
Abstract

The purpose of this study was to describe the development and preliminary testing of a new scale assessing knowledge about melanoma risk factors and early detection/secondary prevention. Data was drawn from a longitudinal study assessing barriers and facilitators of skin self- examination among patients diagnosed with melanoma. For the current analysis, 191 patients who completed the new 9-item Knowledge About Melanoma Early Detection Scale and other study measures were included. Exploratory factor analysis with were conducted, which identified a robust scale comprised of 6 items with factor loadings ranging from .56 to .81. Higher scores on the Knowledge About Melanoma Early Detection Scale were associated with younger age and more positive attitudes about melanoma prevention, but not with biological sex, education, melanoma stage, or past self-administered and physician-provided skin checks. Further studies are needed to replicate these findings and to further establish the predictive validity of this scale and its usefulness for health research., Author(s): Adina Coroiu [sup.1] [sup.2] , Chelsea Moran [sup.3] , Linda Kwakkenbos [sup.4] , Brett D. Thombs [sup.2] [sup.5] [sup.6] [sup.7] [sup.8] [sup.9] , Annett Körner [sup.2] [sup.5] [sup.10] [sup.11] [...]

Published
2023
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18. 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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20. 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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21. 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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27. Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

Author

Thombs, Brett D., Levis, Brooke, Carrier, Marie-Eve, Dyas, Laura, Nordlund, Julia, Tao, Lydia, Aguila, Kylene, Bourgeault, Angelica, Konrad, Violet, Sauvé, Maureen, Connolly, Kerri, Henry, Richard S., Østbø, Nora, Levis, Alexander W., Kwakkenbos, Linda, Malcarne, Vanessa L., El-Baalbaki, Ghassan, Hudson, Marie, Wurz, Amanda, Culos-Reed, S. Nicole, Platt, Robert W., and Benedetti, Andrea

Published
2022
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28. 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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29. 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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30. 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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31. Effects of a multi-faceted education and support programme on anxiety symptoms among people with systemic sclerosis and anxiety during COVID-19 (SPIN-CHAT): a two-arm parallel, partially nested, randomised, controlled trial

Author

Thombs, Brett D, Kwakkenbos, Linda, Levis, Brooke, Bourgeault, Angelica, Henry, Richard S, Levis, Alexander W, Harb, Sami, Tao, Lydia, Carrier, Marie-Eve, Bustamante, Laura, Duchek, Delaney, Dyas, Laura, El-Baalbaki, Ghassan, Ellis, Kelsey, Rice, Danielle B, Wurz, Amanda, Nordlund, Julia, Gagarine, Maria, Turner, Kimberly A, Østbø, Nora, Culos-Reed, Nicole, Hebblethwaite, Shannon, Patten, Scott, Bartlett, Susan J, Varga, John, Mouthon, Luc, Markham, Sarah, Martin, Michael S, and Benedetti, Andrea

Published
2021
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32. 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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34. 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., and Fortuné, Catherine

Subjects
SYSTEMIC scleroderma, INFORMATION measurement, PHYSICAL mobility, AUTOIMMUNE diseases, CONFIDENCE intervals
Abstract

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

Published
2024
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35. Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: A Scleroderma Patient-centered Intervention Network study.

Author

Adams, Claire, Nassar, Elsa-Lynn, Carrier, Marie-Eve, Kwakkenbos, Linda, Henry, Richard S, Virgili-Gervais, Gabrielle, Hu, Sophie, Bartlett, Susan J, Fortuné, Catherine, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Hudson, Marie, Lawrie-Jones, Amanda, Lewis, Nancy, Malcarne, Vanessa, Mayes, Maureen D, Patten, Scott B, Richard, Michelle, and Sauvé, Maureen

Published
2024
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36. Factors associated with physical function among people with systemic sclerosis: a SPIN cohort cross-sectional study.

Author

Santo, Tiffany Dal, Rice, Danielle B, Carrier, Marie-Eve, Virgili-Gervais, Gabrielle, Levis, Brooke, Kwakkenbos, Linda, Golberg, Meira, Bartlett, Susan J, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Hudson, Marie, Hummers, Laura K, Malcarne, Vanessa L, Mayes, Maureen D, Mouthon, Luc, Richard, Michelle, Sauvé, Maureen, Wojeck, Robyn K, and Geoffroy, Marie-Claude

Subjects
LIFESTYLES, CROSS-sectional method, BODY mass index, MYOSITIS, RESEARCH funding, MULTIPLE regression analysis, SMOKING, RHEUMATOID arthritis, SEX distribution, FUNCTIONAL status, MULTIVARIATE analysis, SEVERITY of illness index, INTERSTITIAL lung diseases, DESCRIPTIVE statistics, AGE distribution, LONGITUDINAL method, SYSTEMIC scleroderma, MARITAL status, SOCIODEMOGRAPHIC factors, HEALTH outcome assessment, CONFIDENCE intervals, ALCOHOL drinking, PULMONARY arterial hypertension, DATA analysis software, PHYSICAL activity, EDUCATIONAL attainment
Abstract

Objectives To compare physical function in systemic sclerosis (SSc, scleroderma) to general population normative data and identify associated factors. Methods Scleroderma Patient-centered Intervention Network Cohort participants completed the Physical Function domain of the Patient-Reported Outcomes Measurement Information System Version 2 upon enrolment. Multivariable linear regression was used to assess associations of sociodemographic, lifestyle, and disease-related variables. Results Among 2385 participants, the mean physical function T-score (43.7, SD = 8.9) was ∼2/3 of a standard deviation (SD) below the US general population (mean = 50, SD = 10). Factors associated in the multivariable analysis included older age (−0.74 points per SD years, 95% CI −0.78 to −1.08), female sex (−1.35, −2.37 to −0.34), fewer years of education (−0.41 points per SD in years, −0.75 to −0.07), being single, divorced, or widowed (−0.76, −1.48 to −0.03), smoking (−3.14, −4.42 to −1.85), alcohol consumption (0.79 points per SD drinks per week, 0.45–1.14), BMI (−1.41 points per SD, −1.75 to −1.07), diffuse subtype (−1.43, −2.23 to −0.62), gastrointestinal involvement (−2.58, −3.53 to −1.62), digital ulcers (−1.96, −2.94 to −0.98), moderate (−1.94, −2.94 to −0.93) and severe (−1.76, −3.24 to −0.28) small joint contractures, moderate (−2.10, −3.44 to −0.76) and severe (−2.54, −4.64 to −0.44) large joint contractures, interstitial lung disease (−1.52, −2.27 to −0.77), pulmonary arterial hypertension (−3.72, −4.91 to −2.52), rheumatoid arthritis (−2.10, −3.64 to −0.56) and idiopathic inflammatory myositis (−2.10, −3.63 to −0.56). Conclusion Physical function is impaired for many individuals with SSc and is associated with multiple disease factors. [ABSTRACT FROM AUTHOR]

Published
2024
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37. 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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38. 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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39. 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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40. Protocol for the Development of a Tool to Map Systemic Sclerosis Pain Sources, Patterns, and Management Experiences: A Scleroderma Patient-Centered Intervention Network Patient-Researcher Partnership

Author

Santo, Tiffany Dal, primary, Golberg, Meira, additional, Nassar, Elsa-Lynn, additional, Carrier, Marie-Eve, additional, Hu, Sophie, additional, Kwakkenbos, Linda, additional, Bartlett, Susan J., additional, Fox, Rina S., additional, Lee, Yvonne C., additional, Varga, John, additional, Benedetti, Andrea, additional, and Thombs, Brett D, additional

Published
2024
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42. Systematic review of body image measures

Author

Kling, Johanna, Kwakkenbos, Linda, Diedrichs, Phillippa C., Rumsey, Nichola, Frisén, Ann, Brandão, Maria Piedade, Silva, Anabela G., Dooley, Barbara, Rodgers, Rachel F., and Fitzgerald, Amanda

Published
2019
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44. Factors associated with satisfaction with social roles and activities among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) cohort cross-sectional study

Author

Dal Santo, Tiffany, primary, Rice, Danielle, additional, Carrier, Marie-Eve, additional, Virgili-Gervais, Gabrielle, additional, Levis, Brooke, additional, Kwakkenbos, Linda, additional, Bartlett, Susan J, additional, Gietzen, Amy, additional, Gottesman, Karen, additional, Guillot, Genevieve, additional, Hudson, Marie, additional, Hummers, Laura K, additional, Malcarne, Vanessa, additional, Mayes, Maureen, additional, Mouthon, Luc, additional, Richard, Michelle, additional, Sauve, Maureen, additional, Wojeck, Robyn, additional, Geoffroy, Marie-Claude, additional, Benedetti, Andrea, additional, and Thombs, Brett, additional

Published
2024
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46. 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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49. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.

Author

Kwakkenbos, Linda, Jewett, Lisa R, Baron, Murray, Bartlett, Susan J, Furst, Dan, Gottesman, Karen, Khanna, Dinesh, Malcarne, Vanessa L, Mayes, Maureen D, Mouthon, Luc, Poiraudeau, Serge, Sauve, Maureen, Nielson, Warren R, Poole, Janet L, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia Hm, Hudson, Marie, Impens, Ann, Körner, Annett, Leite, Catarina, Costa Maia, Angela, Mendelson, Cindy, Pope, Janet, Steele, Russell J, Suarez-Almazor, Maria E, Ahmed, Sara, Coronado-Montoya, Stephanie, Delisle, Vanessa C, Gholizadeh, Shadi, Jang, Yeona, Levis, Brooke, Milette, Katherine, Mills, Sarah D, Razykov, Ilya, Fox, Rina S, and Thombs, Brett D

Subjects
Mental Health, Rehabilitation Medicine, Rheumatology, Statistics & Research Methods, Clinical Sciences, Public Health and Health Services, Other Medical and Health Sciences
Abstract

IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Published
2013

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