ArticleRheumatology (Oxford, England)2020
How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?
Article in Rheumatology (Oxford, England), 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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
12 citing papers in PubMed.
- Treating skin involvement in diffuse cutaneous systemic sclerosis: results from an international scleroderma specialist survey.Rheumatology advances in practice · 2026Article
- Avoidant or Restrictive Food Intake Disorder Symptoms in Adults With Systemic Sclerosis: A Nationwide Study in Spain.Arthritis care & research · 2025Article
- Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study.Rheumatology advances in practice · 2025Article
- Early, integrated systemic sclerosis palliative care for patients and their caregivers: description of a new model of care.Rheumatology advances in practice · 2025Article
- Clinician and patient experiences of managing and living with oral and dental manifestations of scleroderma: A scoping review.Journal of scleroderma and related disorders · 2024Article
- Time interval between the onset of connective tissue disease symptoms and first contact with a rheumatologist: results from the German National Database of collaborative arthritis centers.Rheumatology international · 2023Review
- Step forward in early recognition of systemic sclerosis: data from the Leiden CCISS cohort.RMD open · 2023Article
- Quality Measures in Systemic Sclerosis.Diagnostics (Basel, Switzerland) · 2023Review
- Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study.Orphanet journal of rare diseases · 2023Article
- Development of a patient-reported experience measure for chronic inflammatory skin diseases.Journal of the European Academy of Dermatology and Venereology : JEADV · 2022Article
- Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews.Rheumatology (Oxford, England) · 2021Article
- Requirements for systemic sclerosis expert centres in the Netherlands: A Delphi consensus study.Journal of scleroderma and related disorders · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
21 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.
methodsAn online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals.
resultsSix hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators.
conclusionThe perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc.
Indexed as
Identifiers
What 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.