MétaCan
Menu
Back to cohort
Record W3214930221 · doi:10.1186/s13063-021-05827-z

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

2021· article· en· W3214930221 on OpenAlexafffund
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, Dan Bilsker, A.H. Levis, Kimberly A. Turner, Julie Cumin, Joep Welling, Catherine Fortuné, Catarina Leite, Karen Gottesman, Maureen Sauvé, Tatiana Sofia Rodrı́guez-Reyna, Maggie Larché, Ward van Breda, María E. Suarez‐Almazor, Amanda Wurz, Nicole Culos-Reed, Vanessa L. Malcarne, Maureen D. Mayes, Isabelle Boutron, Luc Mouthon, Andrea Benedetti, Brett D. Thombs, Robert J. Riggs, Shervin Assassi, Ghassan El‐Baalbaki, Carolyn Ells, C.H.M. van den Ende, Kim Fligelstone, Amy Gietzen, Geneviève Guillot, Daphna Harel, Monique Hinchcliff, Christelle Nguyen, François Rannou, Michelle Richard, Anne A. Schouffoer, C. Agard, Nassim Ait Abdallah, Alexandra Albert, Marc André, Elana J. Bernstein, S. Berthier, Lyne Bissonnette, Alessandra Bruns, Patrícia Carreira, Marion Casadevall, Benjamin Chaigne, Chase Correia, Benjamin Crichi, Christopher P. Denton, Robyn T. Domsic, James V. Dunne, Bertrand Dunogué, Regina Faré, Dominique Farge, Paul R. Fortin, Brigitte Granel-Rey, Geneviève Gyger, É. Hachulla, Ariane L. Herrick, Sabrina Hoa, Alena Ikic, Niall Jones, Suzanne Kafaja, Nader Khalidi, M. Lambert, David Launay, Hélène Maillard, Nancy Maltez, Joanne Manning, Isabelle Marié, Maria Martin, Thierry Martin, Ariel Masetto, F. Maurier, A. Mékinian, Sheila Melchor, Mandana Nikpour, Louis Olagne, Vincent Poindron, Susanna Proudman, Alexis Régent, Sébastien Rivière, David Robinson, Esther Rodríguez, Sophie Roux, P. Smets, Vincent Sobanski, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, John Varga, Pearce Wilcox, Angelica Bourgeault, Mara Cañedo Ayala, Andrea Carboni Jiménez, Marie-Nicole Discepola, Maria Gagarine, Nora Østbø

Bibliographic record

VenueTrials · 2021
Typearticle
Languageen
FieldMedicine
TopicSystemic Sclerosis and Related Diseases
Canadian institutionsAlberta Health ServicesUniversity of the Fraser ValleyMcMaster UniversityImpactUniversity of British ColumbiaToronto Western HospitalUniversity of TorontoWestern UniversitySimon Fraser UniversityMcGill UniversityMcGill University Health CentreMilton District HospitalUniversity of CalgarySt Joseph's Health CareMount Sinai HospitalMultiple Sclerosis Society of CanadaJewish General Hospital
FundersCanadian Institutes of Health ResearchUniversidade do MinhoUniversité Paris DescartesMcGill UniversityYork UniversityYale UniversityUniversité de ParisUniversité du Québec à MontréalScleroderma Foundation-Tri-State
KeywordsRandomized controlled trialMedicinePhysical therapyRandomizationSelf-managementCohortIntervention (counseling)PsychiatryInternal medicine

Abstract

fetched live from OpenAlex

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.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.011
metaresearch head score (Gemma)0.003
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMeta-epidemiology (narrow)
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Randomized trial · Consensus signal: Randomized trial
GenreCandidate signal: Protocol · Consensus signal: Protocol
Teacher disagreement score0.053
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0110.003
Meta-epidemiology (narrow)0.0010.000
Meta-epidemiology (broad)0.0040.002
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.078
GPT teacher head0.416
Teacher spread0.338 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

Study designRandomized trial
Domainnot available
GenreProtocol

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations8
Published2021
Admission routes2
Has abstractyes

Explore more

Same venueTrialsSame topicSystemic Sclerosis and Related DiseasesFrench-language works237,207