ArticleClinical and experimental rheumatology
New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN).
Article in Clinical and experimental rheumatology. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it, 66 citations in OpenAlex.
- Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence.Systematic reviews · 2019Pooled it
- PROState Pathway Embedded Comparative Trial: The IP3-PROSPECT study.Contemporary clinical trials · 2021Trial
- Article
- Article
- Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: A Scleroderma Patient-centered Intervention Network study.Journal of scleroderma and related disorders · 2024Article
- Perception of aesthetic impairment in patients with systemic sclerosis determined using a semi-quantitative scale and its association with disease characteristics.Journal of scleroderma and related disorders · 2024Article
- Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews.Research involvement and engagement · 2024Article
- 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.Translational behavioral medicine · 2023Article
- Mental Health Care Use and Associated Factors in Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.ACR open rheumatology · 2022Article
- Article
- 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.Journal of psychosomatic research · 2020Article
- The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network Project.Journal of scleroderma and related disorders · 2019Article
- Article
- What moves the rheumatologist? Unravelling decision making in the referral of systemic sclerosis patients to health professionals: a qualitative study.Rheumatology advances in practice · 2018Article
- Stretching Reduces Skin Thickness and Improves Subcutaneous Tissue Mobility in a Murine Model of Systemic Sclerosis.Frontiers in immunology · 2017Article
- Development and Validation of the Body Concealment Scale for Scleroderma.Arthritis care & research · 2016Article
- Translating rare-disease therapies into improved care for patients and families: what are the right outcomes, designs, and engagement approaches in health-systems research?Genetics in medicine : official journal of the American College of Medical Genetics · 2016Review
- Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study.PloS one · 2016Article
- Reliability, validity and responsiveness to change of the Saint George's Respiratory Questionnaire in early diffuse cutaneous systemic sclerosis.Rheumatology (Oxford, England) · 2015Observational
- Can we deliver randomized trials of focal therapy in prostate cancer?Nature reviews. Clinical oncology · 2014Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
35 authors at 14 institutions in 5 countries.
Funding
Abstract
Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.
Indexed as
Identifiers
22244687PMC3925434W2244485377What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.