Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial
Objectives The Scleroderma Patient-centered Intervention Network—Scleroderma Support
group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence …
group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence …
[HTML][HTML] Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support …
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 …
specific education and emotional and practical support. Systemic sclerosis (SSc), or …
The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of …
Introduction Psychosocial and rehabilitation interventions are increasingly used to attenuate
disability and improve health-related quality of life (HRQL) in chronic diseases, but are …
disability and improve health-related quality of life (HRQL) in chronic diseases, but are …
[HTML][HTML] Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence
Background Peer-led support groups play an important role in supporting people with
chronic diseases. They may be particularly important for people with rare diseases who …
chronic diseases. They may be particularly important for people with rare diseases who …
[HTML][HTML] Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of …
Background More people with rare diseases likely receive disease education and emotional
and practical support from peer-led support groups than any other way. Most rare-disease …
and practical support from peer-led support groups than any other way. Most rare-disease …
The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts
DH Dougherty, L Kwakkenbos, ME Carrier… - …, 2018 - academic.oup.com
Abstract Objectives The Scleroderma Patient-centered Intervention Network (SPIN) Cohort is
a web-based cohort designed to collect patient-reported outcomes at regular intervals as a …
a web-based cohort designed to collect patient-reported outcomes at regular intervals as a …
[HTML][HTML] Randomized feasibility trial of the scleroderma patient-centered intervention network self-management (SPIN-SELF) program
L Kwakkenbos, N Østbø, ME Carrier… - Pilot and Feasibility …, 2022 - Springer
Abstract Background The Scleroderma Patient-centered Intervention Network (SPIN)
developed an online self-management program (SPIN-SELF) designed to improve disease …
developed an online self-management program (SPIN-SELF) designed to improve disease …
[HTML][HTML] The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized …
J Nordlund, RS Henry, L Kwakkenbos, ME Carrier… - Trials, 2021 - Springer
Abstract Background Systemic sclerosis (scleroderma; SSc) is a rare autoimmune
connective tissue disease. We completed an initial feasibility trial of an online self …
connective tissue disease. We completed an initial feasibility trial of an online self …
Development and preliminary validation of the scleroderma support group leader self-efficacy scale
NE Pal, ST Gumuchian, VC Delisle… - … of Scleroderma and …, 2018 - journals.sagepub.com
Support groups are an important resource for people living with systemic sclerosis (SSc;
scleroderma). Peer support group leaders play an important role in the success and …
scleroderma). Peer support group leaders play an important role in the success and …