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1. Additional file 1 of 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

Abstract

Additional file 1. Supplementary material.

Published
2023
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2. 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 S. R., 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.

Abstract

Background The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program. Methods This feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged. Results Of 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program’s modules (median = 2). Conclusions The results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement. Trial registration clinicaltrials.gov , NCT03914781 . Registered 16 April 2019.

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

Author

Carrier, Marie-Eve, Kwakkenbos, Linda, Boutron, Isabelle, Welling, Joep, Sauve, Maureen, Ende, Cornelia van den, Schouffoer, Anne A., Hudson, Marie, Maia, Ângela, Leite, Catarina, SPIN Investigators, and Universidade do Minho

Subjects
medicine.medical_specialty, Functional impairment, Immunology, Scleroderma, Feasibility studies, Experimental Psychopathology and Treatment, 03 medical and health sciences, 0302 clinical medicine, Exercise program, Physical medicine and rehabilitation, Rheumatology, Hand exercises, Intervention (counseling), medicine, Immunology and Allergy, 030212 general & internal medicine, 030203 arthritis & rheumatology, Protocol (science), Hand function, business.industry, Systemic, Tele-rehabilitation, medicine.disease, Clinical Trial, Physical therapy, Trial protocols, business, Patient centered
Abstract

Background: Significant functional impairment of the hands is nearly universal in systemic sclerosis (SSc, scleroderma). Hand exercises may improve hand function, but developing, testing and disseminating rehabilitation interventions in SSc is challenging. The Scleroderma Patient-centered Intervention Network (SPIN) was established to address this issue and has developed an online hand exercise program to improve hand function for SSc patients (SPIN-HAND). The aim of the proposed feasibility trial is to evaluate the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-HAND intervention. Design and methods: The SPIN-HAND 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 at least mild hand function limitations (Cochin Hand Function Scale ≥3) and an indicated interest in using an online hand-exercise intervention will be randomized with a 1:1 ratio to be offered to use the SPIN-HAND program or usual care for 3 months. The primary aim is to evaluate the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-HAND program. Discussion: The SPIN-HAND exercise program is a self-help tool that may improve hand function in patients with SSc. The SPIN-HAND 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-HAND program. Trial registration: ClinicalTrials.gov Identifier: NCT03092024., Canadian Institutes of Health Research(undefined)

Published
2018
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4. Additional file 3 of 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, Julia, Henry, Richard S., Kwakkenbos, Linda, Carrier, Marie-Eve, Levis, Brooke, Nielson, Warren R., Bartlett, Susan J., Dyas, Laura, Tao, Lydia, Fedoruk, Claire, Nielsen, Karen, Hudson, Marie, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Levis, Alexander W., Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortun��, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodr��guez-Reyna, Tatiana Sof��a, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Wurz, Amanda, Culos-Reed, Nicole, Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Subjects
3. Good health
Abstract

Additional File 3. Participant consent form (English version)

5. Additional file 3 of 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, Julia, Henry, Richard S., Kwakkenbos, Linda, Carrier, Marie-Eve, Levis, Brooke, Nielson, Warren R., Bartlett, Susan J., Dyas, Laura, Tao, Lydia, Fedoruk, Claire, Nielsen, Karen, Hudson, Marie, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Levis, Alexander W., Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortun��, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodr��guez-Reyna, Tatiana Sof��a, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Wurz, Amanda, Culos-Reed, Nicole, Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Subjects
3. Good health
Abstract

Additional File 3. Participant consent form (English version)

6. Additional file 2 of 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, Julia, Henry, Richard S., Kwakkenbos, Linda, Carrier, Marie-Eve, Levis, Brooke, Nielson, Warren R., Bartlett, Susan J., Dyas, Laura, Tao, Lydia, Fedoruk, Claire, Nielsen, Karen, Hudson, Marie, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Levis, Alexander W., Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortun��, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodr��guez-Reyna, Tatiana Sof��a, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Wurz, Amanda, Culos-Reed, Nicole, Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Subjects
behavioral disciplines and activities, 3. Good health
Abstract

Additional File 2. Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) 2013 Checklist: Recommended items to address in a clinical trial protocol and related documents

7. Additional file 2 of 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, Julia, Henry, Richard S., Kwakkenbos, Linda, Carrier, Marie-Eve, Levis, Brooke, Nielson, Warren R., Bartlett, Susan J., Dyas, Laura, Tao, Lydia, Fedoruk, Claire, Nielsen, Karen, Hudson, Marie, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Levis, Alexander W., Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortun��, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodr��guez-Reyna, Tatiana Sof��a, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Wurz, Amanda, Culos-Reed, Nicole, Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Subjects
behavioral disciplines and activities, 3. Good health
Abstract

Additional File 2. Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) 2013 Checklist: Recommended items to address in a clinical trial protocol and related documents

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

Subjects
3. Good health
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

9. Additional file 1 of 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, Julia, Henry, Richard S., Kwakkenbos, Linda, Carrier, Marie-Eve, Levis, Brooke, Nielson, Warren R., Bartlett, Susan J., Dyas, Laura, Tao, Lydia, Fedoruk, Claire, Nielsen, Karen, Hudson, Marie, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Levis, Alexander W., Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortun��, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodr��guez-Reyna, Tatiana Sof��a, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Wurz, Amanda, Culos-Reed, Nicole, Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Subjects
ComputingMethodologies_IMAGEPROCESSINGANDCOMPUTERVISION, behavioral disciplines and activities, 3. Good health
Abstract

Additional File 1. Items from the World Health Organization Trial Registration Data Set

10. Additional file 1 of 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, Julia, Henry, Richard S., Kwakkenbos, Linda, Carrier, Marie-Eve, Levis, Brooke, Nielson, Warren R., Bartlett, Susan J., Dyas, Laura, Tao, Lydia, Fedoruk, Claire, Nielsen, Karen, Hudson, Marie, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R., Piotrowski, Pamela, Jewett, Lisa R., Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Levis, Alexander W., Turner, Kimberly A., Cumin, Julie, Welling, Joep, Fortun��, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodr��guez-Reyna, Tatiana Sof��a, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E., Wurz, Amanda, Culos-Reed, Nicole, Malcarne, Vanessa L., Mayes, Maureen D., Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D.

Subjects
ComputingMethodologies_IMAGEPROCESSINGANDCOMPUTERVISION, behavioral disciplines and activities, 3. Good health
Abstract

Additional File 1. Items from the World Health Organization Trial Registration Data Set

11. Update of EULAR recommendations for the treatment of systemic sclerosis

Author

Kowal-Bielecka O., Fransen J., Avouac J., Becker M., Kulak A., Allanore Y., Distler O., Clements P., Cutolo M., Czirjak L., Damjanov N., Del Galdo F., Denton C. P., Distler J. H. W., Foeldvari I., Figelstone K., Frerix M., Furst D. E., Guiducci S., Hunzelmann N., Khanna D., Matucci-Cerinic M., Herrick A. L., Van Den Hoogen F., Van Laar J. M., Riemekasten G., Silver R., Smith V., Sulli A., Tarner I., Tyndall A., Welling J., Wigley F., Valentini G., Walker U. A., Zulian F., Muller-Ladner U., Daikeler T., Lanciano E., Becvar R., Tomcik M., Gindzienska-Sieskiewicz E., Cuomo G., Iudici M., Rednic S., Vlachoyiannopoulos P. G., Caporali R., Carreira P. E., Novak S., Minier T., Kucharz E. J., Gabrielli A., Moroncini G., Airo' P., Hesselstrand R., Martinovic D., Radic M., Marasovic-Krstulovic D., Braun-Moscovici Y., Balbir-Gurman A., Lo Monaco A., Caramaschi P., Morovic-Vergles J., Henes J., Ortiz Santamaria V., Heitmann S., Krasowska D., Seidel M. F., Hasler P., Pereira Da Silva J. A., Salvador M. J., Stamenkovic B., Stankovic A., Tikly M., Ananieva L. P., Beretta L., Szucs G., Szamosi S., de la Puente Bujidos C., Midtvedt O., Hoffmann-Vold A. -M., Launay D., Hachulla E., Riccieri V., Ionescu R., Opris D., Mihai C., Herrgott I., Beyer C., Ingegnoli F., von Muhlen C. A., Alegre-Sancho J. J., Beltran-Catalan E., Aringer M., Fantana J., Leuchten N., Tausche A. -K., De Langhe E., Vanthuyne M., Anic B., Baresic M., Mayer M., Uprus M., Otsa K., Yavuz S., Granel B., Azevedo V. F., Muller C., Jimenez S. A., Popa S., Agachi S., Zenone T., Stebbings S., Dockerty J., Vacca A., Schollum J., Veale D. J., Toloza S., Xu D., Olas J., Rosato E., Foti R., Adler S., Dan D., Wiesik-Szewczyk E., Olesinska M., Kayser C., Fathi N., de la Pena Lefebvre P. G., Imbert B., Kowal-Bielecka, O., Fransen, J., Avouac, J., Becker, M., Kulak, A., Allanore, Y., Distler, O., Clements, P., Cutolo, M., Czirjak, L., Damjanov, N., Del Galdo, F., Denton, C. P., Distler, J. H. W., Foeldvari, I., Figelstone, K., Frerix, M., Furst, D. E., Guiducci, S., Hunzelmann, N., Khanna, D., Matucci-Cerinic, M., Herrick, A. L., Van Den Hoogen, F., Van Laar, J. M., Riemekasten, G., Silver, R., Smith, V., Sulli, A., Tarner, I., Tyndall, A., Welling, J., Wigley, F., Valentini, G., Walker, U. A., Zulian, F., Muller-Ladner, U., Daikeler, T., Lanciano, E., Becvar, R., Tomcik, M., Gindzienska-Sieskiewicz, E., Cuomo, G., Iudici, M., Rednic, S., Vlachoyiannopoulos, P. G., Caporali, R., Carreira, P. E., Novak, S., Minier, T., Kucharz, E. J., Gabrielli, A., Moroncini, G., Airo', P., Hesselstrand, R., Martinovic, D., Radic, M., Marasovic-Krstulovic, D., Braun-Moscovici, Y., Balbir-Gurman, A., Lo Monaco, A., Caramaschi, P., Morovic-Vergles, J., Henes, J., Ortiz Santamaria, V., Heitmann, S., Krasowska, D., Seidel, M. F., Hasler, P., Pereira Da Silva, J. A., Salvador, M. J., Stamenkovic, B., Stankovic, A., Tikly, M., Ananieva, L. P., Beretta, L., Szucs, G., Szamosi, S., de la Puente Bujidos, C., Midtvedt, O., Hoffmann-Vold, A. -M., Launay, D., Hachulla, E., Riccieri, V., Ionescu, R., Opris, D., Mihai, C., Herrgott, I., Beyer, C., Ingegnoli, F., von Muhlen, C. A., Alegre-Sancho, J. J., Beltran-Catalan, E., Aringer, M., Fantana, J., Leuchten, N., Tausche, A. -K., De Langhe, E., Vanthuyne, M., Anic, B., Baresic, M., Mayer, M., Uprus, M., Otsa, K., Yavuz, S., Granel, B., Azevedo, V. F., Muller, C., Jimenez, S. A., Popa, S., Agachi, S., Zenone, T., Stebbings, S., Dockerty, J., Vacca, A., Schollum, J., Veale, D. J., Toloza, S., Xu, D., Olas, J., Rosato, E., Foti, R., Adler, S., Dan, D., Wiesik-Szewczyk, E., Olesinska, M., Kayser, C., Fathi, N., de la Pena Lefebvre, P. G., Imbert, B., UCL - SSS/IREC/SLUC - Pôle St.-Luc, UCL - (MGD) Service de rhumatologie, Kowal Bielecka, Otylia, Fransen, Jaap, Avouac, Jerome, Becker, Mike, Kulak, Agnieszka, Allanore, Yannick, Distler, Oliver, Clements, Philip, Cutolo, Maurizio, Czirjak, Laszlo, Damjanov, Nemanja, del Galdo, Francesco, Denton, Christopher P., Distler, Jörg H. W., Foeldvari, Ivan, Figelstone, Kim, Frerix, Marc, Furst, Daniel E., Guiducci, Serena, Hunzelmann, Nicola, Khanna, Dinesh, Matucci Cerinic, Marco, Herrick, Ariane L., van den Hoogen, Frank, van Laar, Jacob M., Riemekasten, Gabriela, Silver, Richard, Smith, Vanessa, Sulli, Alberto, Tarner, Ingo, Tyndall, Alan, Welling, Joep, Wigley, Frederic, Valentini, Gabriele, Walker, Ulrich A., Zulian, Francesco, Müller Ladner, Ulf, Daikeler, Thoma, Lanciano, Elisabetta, Becvã¡r, Radim, Tomcik, Michal, Gindzienska Sieskiewicz, Ewa, Iudici, Michele, Rednic, Simona, Vlachoyiannopoulos, Panayiotis G., Caporali, Roberto, Carreira, Patricia E., Novak, Srdan, Minier, Tã¼nde, Kucharz, Eugene J., Gabrielli, Armando, Moroncini, Gianluca, Airo, Paolo, Hesselstrand, Roger, Martinovic, Duska, Radic, Mislav, Marasovic Krstulovic, Daniela, Braun Moscovici, Yolanda, Monaco, Andrea Lo, Morovic Vergles, Jadranka, Culo, Melanie I., Henes, Jã¶rg, Santamaria, Vera Ortiz, Heitmann, Stefan, Krasowska, Dorota, Michalska Jakubus, Malgorzata, Seidel, Matthias F., Klinik III, Medizinische, Hasler, Paul, Da Silva, José A. Pereira, Salvador, Maria J., Stamenkovic, Bojana, Stankovic, Aleksandra, Tikly, Mohammed, Ananieva, Lidia P., Beretta, Lorenzo, Szucs, Gabriella, Szamosi, Szilvia, de la Puente Bujidos, Carlo, Midtvedt, Øyvind, Hoffmann Vold, Anna Maria, Launay, David, Hachulla, Eric, Riccieri, Valeria, Ionescu, Ruxandra, Opris, Daniela, Mihai, Carina, Herrgott, Ilka, Beyer, Christian, Ingegnoli, Francesca, von Mühlen, Carlos Alberto, Alegre Sancho, Juan José, Beltran Catalan, Emma, Aringer, Martin, Fantana, Julia, Leuchten, Nicolai, Tausche, Anne Kathrin, Langhe, Ellen De, Vanthuyne, Marie, Anic, Branimir, Bareå¡ic, Marko, Mayer, Miroslav, Ãœprus, Maria, Otsa, Kati, Yavuz, Sule, Granel, Brigitte, Jimenez, Sergio A., Popa, Serghei, Agachi, Svetlana, Zenone, Thierry, Stebbings, Simon, Dockerty, Joanne, Vacca, Alessandra, Schollum, Joanna, Veale, Douglas J., Toloza, Sergio, Xu, Dong, Olas, Jacek, Rosato, Edoardo, Foti, Rosario, Adler, Sabine, Dan, Diana, Wiesik Szewczyk, Ewa, Olesinska, Marzena, Kayser, Cristiane, Fathi, Nihal, de la Peña Lefebvre, Paloma García, Imbert, Bernard, and Cuomo, Giovanna

Subjects
Endothelin Receptor Antagonists, Lung Diseases, Kidney Disease, Delphi Technique, Gastrointestinal Diseases, systemic sclerosis, Scleroderma Renal Crisis, Placebo-controlled study, Angiotensin-Converting Enzyme Inhibitors, Lung Disease, Scleroderma, 0302 clinical medicine, Glucocorticoid, Phosphodiesterase 5 Inhibitor, Immunology and Allergy, skin and connective tissue diseases, BIOMEDICINA I ZDRAVSTVO. Kliničke medicinske znanosti. Interna medicina, integumentary system, treatment, genetics and molecular biology (all), Hematopoietic Stem Cell Transplantation, cyclophosphamide, methotrexate, Pulmonary, Orvostudományok, Serotonin Uptake Inhibitor, 3. Good health, Europe, Systematic review, Hypertension, Serotonin Uptake Inhibitors, Cyclophosphamide, Methotrexate, Systemic Sclerosis, Treatment, Fingers, Fluoxetine, Glucocorticoids, Humans, Hypertension, Pulmonary, Kidney Diseases, Phosphodiesterase 5 Inhibitors, Prostaglandins I, Pyrazoles, Pyrimidines, Raynaud Disease, Rheumatology, Scleroderma, Systemic, Ulcer, Immunology, Biochemistry, Genetics and Molecular Biology (all), 030211 gastroenterology & hepatology, Endothelin Receptor Antagonist, Selective Serotonin Reuptake Inhibitors, medicine.drug, Human, medicine.medical_specialty, Gastrointestinal Disease, Klinikai orvostudományok, Riociguat, General Biochemistry, Genetics and Molecular Biology, 03 medical and health sciences, medicine, Finger, biochemistry, Intensive care medicine, BIOMEDICINE AND HEALTHCARE. Clinical Medical Sciences. Internal Medicine, Systemic Sclerosi, 030203 arthritis & rheumatology, business.industry, Systemic, Angiotensin-Converting Enzyme Inhibitor, medicine.disease, Transplantation, Clinical research, Pyrimidine, immunology and allergy, rheumatology, immunology, Pyrazole, Physical therapy, business, Rheumatism
Abstract

The aim was to update the 2009 European League against Rheumatism (EULAR) recommendations for the treatment of systemic sclerosis (SSc), with attention to new therapeutic questions. Update of the previous treatment recommendations was performed according to EULAR standard operating procedures. The task force consisted of 32 SSc clinical experts from Europe and the USA, 2 patients nominated by the pan-European patient association for SSc (Federation of European Scleroderma Associations (FESCA)), a clinical epidemiologist and 2 research fellows. All centres from the EULAR Scleroderma Trials and Research group were invited to submit and select clinical questions concerning SSc treatment using a Delphi approach. Accordingly, 46 clinical questions addressing 26 different interventions were selected for systematic literature review. The new recommendations were based on the available evidence and developed in a consensus meeting with clinical experts and patients. The procedure resulted in 16 recommendations being developed (instead of 14 in 2009) that address treatment of several SSc-related organ complications: Raynaud's phenomenon (RP), digital ulcers (DUs), pulmonary arterial hypertension (PAH), skin and lung disease, scleroderma renal crisis and gastrointestinal involvement. Compared with the 2009 recommendations, the 2016 recommendations include phosphodiesterase type 5 (PDE-5) inhibitors for the treatment of SSc-related RP and DUs, riociguat, new aspects for endothelin receptor antagonists, prostacyclin analogues and PDE-5 inhibitors for SSc-related PAH. New recommendations regarding the use of fluoxetine for SSc-related RP and haematopoietic stem cell transplantation for selected patients with rapidly progressive SSc were also added. In addition, several comments regarding other treatments addressed in clinical questions and suggestions for the SSc research agenda were formulated. These updated data-derived and consensus-derived recommendations will help rheumatologists to manage patients with SSc in an evidence-based way. These recommendations also give directions for future clinical research in SSc.

Published
2017
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