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

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

Publikováno v: RMD Open, Vol 10, Iss 1 (2024)

Objective The objectives were to (1) compare satisfaction with social roles and activities in a large multinational systemic sclerosis (SSc) cohort to general population normative data and (2) identify sociodemographic, lifestyle and SSc disease fact

Externí odkaz: https://doaj.org/article/013d8f853a3b4acc8eb9cc91a6f17411

Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional studyResearch in context

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

Publikováno v: EClinicalMedicine, Vol 62, Iss , Pp 102104- (2023)

Summary: Background: Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance,

Externí odkaz: https://doaj.org/article/3c82e788a0114b59adfd3e08502ac600

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

Autor: Julia Nordlund, Richard S. Henry, Linda Kwakkenbos, Marie-Eve Carrier, Brooke Levis, Warren R. Nielson, Susan J. Bartlett, Laura Dyas, Lydia Tao, Claire Fedoruk, Karen Nielsen, Marie Hudson, Janet Pope, Tracy Frech, Shadi Gholizadeh, Sindhu R. Johnson, Pamela Piotrowski, Lisa R. Jewett, Jessica Gordon, Lorinda Chung, Dan Bilsker, Alexander W. Levis, Kimberly A. Turner, Julie Cumin, Joep Welling, Catherine Fortuné, Catarina Leite, Karen Gottesman, Maureen Sauve, Tatiana Sofía Rodríguez-Reyna, Maggie Larche, Ward van Breda, Maria E. Suarez-Almazor, Amanda Wurz, Nicole Culos-Reed, Vanessa L. Malcarne, Maureen D. Mayes, Isabelle Boutron, Luc Mouthon, Andrea Benedetti, Brett D. Thombs, on behalf of the SPIN Investigators

Publikováno v: Trials, Vol 22, Iss 1, Pp 1-22 (2021)

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-M

Externí odkaz: https://doaj.org/article/1357d21853f5484f8f43ccef5c8ce654

From procedural child rights education to a relational child rights-based practice model

Autor: Tara Collins, Kiaras Gharabaghi, Sheldon Caruana, Shannon Cherry, Richard Marcano-Henry

Publikováno v: Scottish Journal of Residential Child Care, Vol 20, Iss 1, Pp 73-91 (2021)

Children's rights are often operationalised in administrative and procedural ways, particularly in child welfare and residential services contexts. In this article, a group of five authors representing academics and alumni from Ryerson University's C

Externí odkaz: https://doaj.org/article/7e82b8e8334e4732aeccb608a561c848

Religiosity, Religious Fundamentalism, Heterosexism, and Support for Lesbian and Gay Civil Rights: A Moderated Mediation Approach

Autor: Richard S. Henry, Paul B. Perrin, Erin R. Smith

Publikováno v: Social Sciences, Vol 11, Iss 4, p 174 (2022)

Support for lesbian and gay (LG) civil rights has increased in recent decades, but heterosexism is still prevalent, particularly among highly religious populations. Evidence suggests, however, that it may not be affiliation, but rather conviction in

Externí odkaz: https://doaj.org/article/4c77d0e6ee164bbc8e8860d59640d5fb