Search

Your search keyword '"Fortuné, Catherine"' showing total 26 results
Start Over Author "Fortuné, Catherine"
26 results on '"Fortuné, Catherine"'

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
Full Text
View/download PDF

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
Full Text
View/download PDF

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
Full Text
View/download PDF

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
Full Text
View/download PDF

5. 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
Full Text
View/download PDF

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
Full Text
View/download PDF

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
Full Text
View/download PDF

8. 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
Full Text
View/download PDF

9. 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
Full Text
View/download PDF

10. 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
Full Text
View/download PDF

11. 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
Full Text
View/download PDF

12. 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
Full Text
View/download PDF

13. 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., Malcarne, Vanessa L., and Fortuné, Catherine

Subjects
SATISFACTION, CONVERSATION, PLEASURE, RESEARCH funding, LONELINESS, DESCRIPTIVE statistics, LONGITUDINAL method, SYSTEMIC scleroderma, MARITAL status, INTERPERSONAL relations, COVID-19 pandemic, ACTIVITIES of daily living
Abstract

Background: Many individuals with systemic sclerosis (SSc) are at heightened risk for COVID-19 related morbidity and isolation due to interstitial lung disease, frailty, and immunosuppressant use. Minimal research has explored loneliness predictors in individuals with chronic illnesses during COVID-19. This study evaluated moderators of loneliness trajectories in individuals with SSc during COVID-19. Methods: Longitudinal data were analyzed across 30 timepoints from April 2020 to May 2022 from 775 adults in the Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort. Hierarchical linear modeling evaluated cross-level moderators of loneliness trajectories, including marital status, baseline number of household members, number of virtual or telephone one-on-one or virtual group conversations, number of hours spent enjoying in-person household conversations or activities, and satisfaction with quality of in-person household conversations (all in the past week). Level-1 moderation analyses assessed effects of conversation, activity, and satisfaction means and slopes over time. Results: Baseline values were not statistically significant moderators of loneliness trajectories. Higher mean (averaged over time) virtual or telephone one-on-one and in-person household conversations, in-person household activity, and in-person household conversation satisfaction were associated with lower loneliness trajectories (ps <.05). The relationship between in-person household conversation satisfaction and loneliness trajectory was statistically significantly but minimally attenuated over time (p <.001). Conclusions: For people with SSc, higher mean conversation, activity, and satisfaction variables were associated with lower levels of loneliness during the pandemic, but changes in these social variables were generally not predictive of changes in loneliness. [ABSTRACT FROM AUTHOR]

Published
2024
Full Text
View/download PDF

14. 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
Full Text
View/download PDF

15. 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
Full Text
View/download PDF

16. 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
Full Text
View/download PDF

17. 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
Full Text
View/download PDF

18. 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
Full Text
View/download PDF

19. 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
Full Text
View/download PDF

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

Author

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

Published
2021
Full Text
View/download PDF

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

Author

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

Published
2020
Full Text
View/download PDF

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

Author

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

Published
2020
Full Text
View/download PDF

23. 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
Full Text
View/download PDF

24. Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support Group Leader EDucation (SPIN-SSLED) Program.

Author

Thombs, Brett D., Aguila, Kylene, Dyas, Laura, Carrier, Marie-Eve, Fedoruk, Claire, Horwood, Linda, Cañedo-Ayala, Mara, Sauvé, Maureen, Kwakkenbos, Linda, Malcarne, Vanessa L., El-Baalbaki, Ghassan, Peláez, Sandra, Connolly, Kerri, Hudson, Marie, Platt, Robert W., SPIN-SSLED Support Group Advisory Team, Elrod, Stephen, Fortuné, Catherine, Gottesman, Karen, and Nielsen, Karen

Subjects
SUPPORT groups, SELF-efficacy, RANDOMIZED controlled trials, SOCIAL networks, CONNECTIVE tissue diseases, SYSTEMIC scleroderma
Abstract

Background: Some people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to challenges that could be addressed via leader training. The Scleroderma Patient-centered Intervention Network (SPIN), along with SSc patient organization partners, developed a training program for SSc patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. We recently completed a feasibility trial in which we successfully delivered the program to two groups of support group leaders who reported a high level of satisfaction with the program and its delivery. The primary objective of the full-scale SPIN-SSLED trial is to evaluate the effect of the program on support group leaders' self-efficacy for carrying out their leadership role. Secondary objectives include evaluating effects on leader burnout, leader satisfaction (participation efficacy), and emotional distress.Methods/design: The SPIN-SSLED trial is a pragmatic randomized controlled trial (RCT) in which 180 support group leaders will be randomly allocated to training groups of 6 participants each or to a waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups, but not in the waitlist control. Participants allocated to the training program will receive the 13-module SPIN-SSLED Program, delivered via webinar over the course of 3 months in weekly 60-90-min sessions. The primary outcome is leader self-efficacy, measured by the Scleroderma Support Group Leader Self-efficacy Scale post-intervention. Secondary outcomes are leader self-efficacy at 3 months post-intervention, and leader burnout, volunteer job satisfaction (participation efficacy), and emotional distress post-intervention and at 3 months post-intervention.Discussion: The SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks. The program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups, and to be adapted for other chronic diseases.Trial Registration: ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019. [ABSTRACT FROM AUTHOR]

Published
2019
Full Text
View/download PDF

25. 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
Full Text
View/download PDF

26. The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial.

Author

Nordlund J, Henry RS, Kwakkenbos L, Carrier ME, Levis B, Nielson WR, Bartlett SJ, Dyas L, Tao L, Fedoruk C, Nielsen K, Hudson M, Pope J, Frech T, Gholizadeh S, Johnson SR, Piotrowski P, Jewett LR, Gordon J, Chung L, Bilsker D, Levis AW, Turner KA, Cumin J, Welling J, Fortuné C, Leite C, Gottesman K, Sauve M, Rodríguez-Reyna TS, Larche M, van Breda W, Suarez-Almazor ME, Wurz A, Culos-Reed N, Malcarne VL, Mayes MD, Boutron I, Mouthon L, Benedetti A, and Thombs BD

Subjects
Feasibility Studies, Humans, Patient-Centered Care, Randomized Controlled Trials as Topic, COVID-19, Scleroderma, Systemic, Self-Management
Abstract

Background: Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low intervention offer uptake, we will conduct a new feasibility trial with progression to full-scale trial, using a two-arm parallel, partially nested RCT design. The SPIN-SELF Program has also been revised to include facilitator-led videoconference group sessions in addition to online material. We will test the group-based intervention delivery format, then evaluate the effect of the SPIN-SELF Program on disease management self-efficacy (primary) and patient activation, social appearance anxiety, and functional health outcomes (secondary)., Methods: This study is a feasibility trial with progression to full-scale RCT, pending meeting pre-defined criteria, of the SPIN-SELF Program. Participants will be recruited from the ongoing SPIN Cohort ( http://www.spinsclero.com/en/cohort ) and via social media and partner patient organizations. Eligible participants must have SSc and low to moderate disease management self-efficacy (Self-Efficacy for Managing Chronic Disease (SEMCD) Scale score ≤ 7.0). Participants will be randomized (1:1 allocation) to the group-based SPIN-SELF Program or usual care for 3 months. The primary outcome in the full-scale trial will be disease management self-efficacy based on SEMCD Scale scores at 3 months post-randomization. Secondary outcomes include SEMCD scores 6 months post-randomization plus patient activation, social appearance anxiety, and functional health outcomes at 3 and 6 months post-randomization. We will include 40 participants to assess feasibility. At the end of the feasibility portion, stoppage criteria will be used to determine if the trial procedures or SPIN-SELF Program need important modifications, thereby requiring a re-set for the full-scale trial. Otherwise, the full-scale RCT will proceed, and outcome data from the feasibility portion will be utilized in the full-scale trial. In the full-scale RCT, 524 participants will be recruited., Discussion: The SPIN-SELF Program may improve disease management self-efficacy, patient activation, social appearance anxiety, and functional health outcomes in people with SSc. SPIN works with partner patient organizations around the world to disseminate its programs free-of-charge., Trial Registration: ClinicalTrials.gov NCT04246528 . Registered on 27 January 2020., (© 2021. The Author(s).)

Published
2021
Full Text
View/download PDF

Catalog

Books, media, physical & digital resources
See catalog results