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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
Published in:
Arthritis Care & Research, 2024, v. 76, n. 11, p. 1549, doi. 10.1002/acr.25397
By:
- Alkan, Afra;
- Carrier, Marie‐Eve;
- Henry, Richard S.;
- Kwakkenbos, Linda;
- Bartlett, Susan J.;
- Gietzen, Amy;
- Gottesman, Karen;
- Guillot, Geneviève;
- Lawrie‐Jones, Amanda;
- Hudson, Marie;
- Hummers, Laura K.;
- Malcarne, Vanessa L.;
- Mayes, Maureen D.;
- Mouthon, Luc;
- Richard, Michelle;
- Wojeck, Robyn K.;
- Worron‐Sauvé, Maureen;
- Benedetti, Andrea;
- Thombs, Brett D.;
- Fortuné, Catherine
Publication type:
Article
Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: A Scleroderma Patient-centered Intervention Network study.
Published in:
Journal of Scleroderma & Related Disorders, 2024, v. 9, n. 3, p. 242, doi. 10.1177/23971983241262655
By:
- 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;
- Sauvé, Maureen
Publication type:
Article
Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews.
Published in:
Research Involvement & Engagement, 2024, v. 10, p. 1, doi. 10.1186/s40900-024-00546-6
By:
- Wurz, Amanda;
- Ellis, Kelsey;
- Nordlund, Julia;
- Carrier, Marie-Eve;
- Cook, Vanessa;
- Gietzen, Amy;
- Adams, Claire;
- Nassar, Elsa-Lynn;
- Rice, Danielle B.;
- Fortune, Catherine;
- Guillot, Genevieve;
- Mieszczak, Tracy;
- Richard, Michelle;
- Sauve, Maureen;
- Thombs, Brett D.
Publication type:
Article
Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews.
Published in:
Research Involvement & Engagement, 2024, v. 10, n. 1, p. 1, doi. 10.1186/s40900-024-00546-6
By:
- Wurz, Amanda;
- Ellis, Kelsey;
- Nordlund, Julia;
- Carrier, Marie-Eve;
- Cook, Vanessa;
- Gietzen, Amy;
- Adams, Claire;
- Nassar, Elsa-Lynn;
- Rice, Danielle B.;
- Fortune, Catherine;
- Guillot, Genevieve;
- Mieszczak, Tracy;
- Richard, Michelle;
- Sauve, Maureen;
- Thombs, Brett D.
Publication type:
Article
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.
Published in:
Arthritis Care & Research, 2023, v. 75, n. 11, p. 2369, doi. 10.1002/acr.25139
By:
- 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
Publication type:
Article
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.
Published in:
Arthritis Care & Research, 2023, v. 75, n. 10, p. 2158, doi. 10.1002/acr.25115
By:
- 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
Publication type:
Article
Barriers and Facilitators to Physical Activity for People With Scleroderma: A Scleroderma Patient‐Centered Intervention Network Cohort Study.
Published in:
Arthritis Care & Research, 2022, v. 74, n. 8, p. 1300, doi. 10.1002/acr.24567
By:
- Harb, Sami;
- Peláez, Sandra;
- Carrier, Marie‐Eve;
- Kwakkenbos, Linda;
- Bartlett, Susan J.;
- Hudson, Marie;
- Mouthon, Luc;
- Sauvé, Maureen;
- Welling, Joep;
- Shrier, Ian;
- Thombs, Brett D.
Publication type:
Article
Using Optimal Test Assembly Methods for Shortening Patient-Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scale-6: A Scleroderma Patient-Centered Intervention Network Cohort Study.
Published in:
2016
By:
- Levis, Alexander W.;
- Harel, Daphna;
- Kwakkenbos, Linda;
- Carrier, Marie-Eve;
- Mouthon, Luc;
- Poiraudeau, Serge;
- Bartlett, Susan J.;
- Khanna, Dinesh;
- Malcarne, Vanessa L.;
- Sauve, Maureen;
- van den Ende, Cornelia H. M.;
- Poole, Janet L.;
- Schouffoer, Anne A.;
- Welling, Joep;
- Thombs, Brett D.;
- and the Scleroderma Patient-Centered Intervention Network Investigators;
- the Scleroderma Patient-Centered Intervention Network Investigators
Publication type:
journal article
Validation of the Self-Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient-Centered Intervention Network Cohort Study.
Published in:
2016
By:
- Riehm, Kira E.;
- Kwakkenbos, Linda;
- Carrier, Marie-Eve;
- Bartlett, Susan J.;
- Malcarne, Vanessa L.;
- Mouthon, Luc;
- Nielson, Warren R.;
- Poiraudeau, Serge;
- Nielsen, Karen;
- Baron, Murray;
- Frech, Tracy;
- Hudson, Marie;
- Pope, Janet;
- Sauve, Maureen;
- Suarez-Almazor, Maria E.;
- Wigley, Fredrick M.;
- Thombs, Brett D.;
- Scleroderma Patient-Centered Intervention Network Investigators
Publication type:
journal article
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.
Published in:
Trials, 2022, v. 23, n. 1, p. 1, doi. 10.1186/s13063-022-06923-4
By:
- 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.;
- Mouthon, Luc
Publication type:
Article
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.
Published in:
2022
By:
- 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
Publication type:
journal article
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.
Published in:
BMC Rheumatology, 2024, v. 8, n. 1, p. 1, doi. 10.1186/s41927-024-00398-3
By:
- Dal Santo, Tiffany;
- Golberg, Meira;
- Nassar, Elsa-Lynn;
- Carrier, Marie-Eve;
- Hu, Sophie;
- Kwakkenbos, Linda;
- Bartlett, Susan J.;
- Fox, Rina S.;
- Lee, Yvonne C.;
- Varga, John;
- Benedetti, Andrea;
- Thombs, Brett D.;
- Lapointe McKenzie, Jo-Ann;
- Lawrie-Jones, Amanda;
- Mieszczak, Tracy;
- Petrozza, Silvia;
- Sauve, Maureen;
- Wixson, Gayle
Publication type:
Article
Factors associated with physical function among people with systemic sclerosis: a SPIN cohort cross-sectional study.
Published in:
Rheumatology, 2024, v. 63, n. 10, p. 2660, doi. 10.1093/rheumatology/keae162
By:
- 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;
- Geoffroy, Marie-Claude
Publication type:
Article
Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study.
Published in:
2023
By:
- Kwakkenbos, Linda;
- Thombs, Brett D;
- Khanna, Dinesh;
- Carrier, Marie-Eve;
- Baron, Murray;
- Furst, Daniel E;
- Gottesman, Karen;
- van den Hoogen, Frank;
- Malcarne, Vanessa L;
- Mayes, Maureen D;
- Mouthon, Luc;
- Nielson, Warren R;
- Poiraudeau, Serge;
- Riggs, Robert;
- Sauvé, Maureen;
- Wigley, Fredrick;
- Hudson, Marie;
- Bartlett, Susan J
Publication type:
Correction Notice
Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study.
Published in:
Rheumatology, 2017, v. 56, n. 8, p. 1302, doi. 10.1093/rheumatology/kex055
By:
- Kwakkenbos, Linda;
- Thombs, Brett D.;
- Khanna, Dinesh;
- Carrier, Marie-Eve;
- Baron, Murray;
- Furst, Daniel E.;
- Gottesman, Karen;
- van den Hoogen, Frank;
- Malcarne, Vanessa L.;
- Mayes, Maureen D.;
- Mouthon, Luc;
- Nielson, Warren R.;
- Poiraudeau, Serge;
- Riggs, Robert;
- Sauvé, Maureen;
- Wigley, Fredrick;
- Hudson, Marie;
- Bartlett, Susan J.
Publication type:
Article
Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND).
Published in:
PeerJ, 2022, p. 1, doi. 10.7717/peerj.13471
By:
- Kwakkenbos, Linda;
- Carrier, Marie-Eve;
- Welling, Joep;
- Turner, Kimberly A.;
- Cumin, Julie;
- Pépin, Mia;
- van den Ende, Cornelia;
- Schouffoer, Anne A.;
- Hudson, Marie;
- van Breda, Ward;
- Sauve, Maureen;
- Mayes, Maureen D.;
- Malcarne, Vanessa L.;
- Nielson, Warren R.;
- Nguyen, Christelle;
- Boutron, Isabelle;
- Rannou, François;
- Thombs, Brett D.;
- Mouthon, Luc
Publication type:
Article
Moderators of Loneliness Trajectories in People with Systemic Sclerosis During the COVID-19 Pandemic: A SPIN COVID-19 Cohort Longitudinal Study.
Published in:
International Journal of Behavioral Medicine, 2024, v. 31, n. 3, p. 352, doi. 10.1007/s12529-023-10248-0
By:
- 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.;
- Fortuné, Catherine
Publication type:
Article
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.
Published in:
2019
By:
- 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;
- Nielsen, Karen
Publication type:
journal article

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