Cargando…

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

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 suppor...

Descripción completa

Detalles Bibliográficos
Autores principales:	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.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2019
Materias:	Study Protocol
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6909446/ https://www.ncbi.nlm.nih.gov/pubmed/31831073 http://dx.doi.org/10.1186/s13063-019-3747-z

Ejemplares similares

Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial
por: Thombs, Brett D, et al.
Publicado: (2019)

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
por: Thombs, Brett D., et al.
Publicado: (2022)

Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study
por: Gumuchian, Stephanie T., et al.
Publicado: (2016)

Assessing differential item functioning for the Social Appearance Anxiety Scale: a Scleroderma Patient-centred Intervention Network (SPIN) Cohort Study
por: Sommer, Sophia J, et al.
Publicado: (2020)

Shortening patient-reported outcome measures through optimal test assembly: application to the Social Appearance Anxiety Scale in the Scleroderma Patient-centered Intervention Network Cohort
por: Harel, Daphna, et al.
Publicado: (2019)

Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study
por: Kwakkenbos, Linda, et al.
Publicado: (2019)

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
por: Kwakkenbos, Linda, et al.
Publicado: (2022)

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND)
por: Kwakkenbos, Linda, et al.
Publicado: (2022)

Mental Health Care Use and Associated Factors in Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Study
por: Becetti, Karima, et al.
Publicado: (2022)

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
por: Thombs, Brett D., et al.
Publicado: (2020)

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
por: Wojeck, Robyn K., et al.
Publicado: (2023)

The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial
por: Carrier, Marie-Eve, et al.
Publicado: (2020)

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program
por: Kwakkenbos, Linda, et al.
Publicado: (2022)

Use of the nominal group technique to identify stakeholder priorities and inform survey development: an example with informal caregivers of people with scleroderma
por: Rice, Danielle B, et al.
Publicado: (2018)

Factor structure and convergent validity of the Derriford Appearance Scale-24 using standard scoring versus treating ‘not applicable’ responses as missing data: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study
por: Merz, Erin L, et al.
Publicado: (2018)

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
por: Thombs, Brett D., et al.
Publicado: (2020)

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
por: Nordlund, Julia, et al.
Publicado: (2021)

Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study
por: Provencher, Sabrina, et al.
Publicado: (2023)

Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study
por: Wu, Yin, et al.
Publicado: (2021)

Effect of support group peer facilitator training programmes on peer facilitator and support group member outcomes: a systematic review
por: Delisle, Vanessa C, et al.
Publicado: (2016)

Effects of cosmetic and other camouflage interventions on appearance-related and psychological outcomes among adults with visible differences in appearance: a systematic review
por: Gholizadeh, Shadi, et al.
Publicado: (2021)

Exploring research team members’ and trial participants’ perceptions of acceptability and implementation within one videoconference-based supportive care program for individuals affected by systemic sclerosis during COVID-19: a qualitative interview study
por: Wurz, Amanda, et al.
Publicado: (2023)

L-carnosine as an enhancer to computerized cognitive behaviour therapy in Japanese workers, an unjustified claim
por: Sauvé, Geneviève, et al.
Publicado: (2018)

Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study
por: Wu, Yin, et al.
Publicado: (2020)

An Assessment of the Measurement Equivalence of English and French Versions of the Center for Epidemiologic Studies Depression (CES-D) Scale in Systemic Sclerosis
por: Delisle, Vanessa C., et al.
Publicado: (2014)

The Scleroderma Patient-centered Intervention Network for conducting large-scale international trials of nonpharmacological interventions in scleroderma: a way ahead for lupus?
por: Thombs, Brett D
Publicado: (2014)

Effects of a multi-faceted education and support programme on anxiety symptoms among people with systemic sclerosis and anxiety during COVID-19 (SPIN-CHAT): a two-arm parallel, partially nested, randomised, controlled trial
por: Thombs, Brett D, et al.
Publicado: (2021)

Mental health before and during the pandemic in people with systemic sclerosis
por: Henry, Richard S, et al.
Publicado: (2022)

Systemic sclerosis and COVID-19 vaccines: a SPIN Cohort study
por: Gordon, Jessica K, et al.
Publicado: (2022)

The Comparability of English, French and Dutch Scores on the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F): An Assessment of Differential Item Functioning in Patients with Systemic Sclerosis
por: Kwakkenbos, Linda, et al.
Publicado: (2014)

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context
por: Kwakkenbos, Linda, et al.
Publicado: (2013)

Systemic sclerosis (scleroderma): remaining challenges
por: Connolly, Mary Karin
Publicado: (2021)

Sociodemographic and Disease Correlates of Body Image Distress among Patients with Systemic Sclerosis
por: Jewett, Lisa R., et al.
Publicado: (2012)

Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers
por: Kirren, Quentin, et al.
Publicado: (2023)

Scleroderma with Nodular Scleroderma
por: Srisuttiyakorn, Chutika, et al.
Publicado: (2016)

Risk of bias from inclusion of patients who already have diagnosis of or are undergoing treatment for depression in diagnostic accuracy studies of screening tools for depression: systematic review
por: Thombs, Brett D, et al.
Publicado: (2011)

Reporting of Positive Results in Randomized Controlled Trials of Mindfulness-Based Mental Health Interventions
por: Coronado-Montoya, Stephanie, et al.
Publicado: (2016)

Scleroderma
Publicado: (1890)

Checkpoint Inhibitor-Associated Scleroderma and Scleroderma Mimics
por: Macklin, Michael, et al.
Publicado: (2023)

Structural validation of the Self-Compassion Scale with a German general population sample
por: Coroiu, Adina, et al.
Publicado: (2018)

Cannot write session to /tmp/vufind_sessions/sess_qjdrbmknttog7hc5dhf2arqrni