ArticleLung2018
Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners.
Article in Lung, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
What it found
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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.
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Who cites it
26 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Psychiatric symptoms and syndromes in sarcoidosis: a systematic review and meta-analysis.Frontiers in medicine · 2025Pooled it
- Diagnosis and treatment of lung disease associated with alpha one-antitrypsin deficiency: A position statement from the Thoracic Society of Australia and New Zealand.Respirology (Carlton, Vic.) · 2020Guideline
- Treatable traits approach for personalised management of sarcoidosis.BMJ open respiratory research · 2026Review
- Quality of Life in Sarcoidosis.Diagnostics (Basel, Switzerland) · 2026Review
- Innovating care for people with sarcoidosis using a machine learning-driven approach.Respiratory research · 2025Article
- Health-related quality of life in sarcoidosis patients and the effect of occupational exposures: a cross-sectional study.BMC pulmonary medicine · 2025Article
- Article
- [Position paper of the Austrian Society for Rheumatology and the Austrian Society for Pneumology on the diagnosis and treatment of sarcoidosis 2024].Wiener klinische Wochenschrift · 2024Article
- Is YouTube a sufficient source of information on Sarcoidosis?Respiratory research · 2024Article
- "The chameleon among diseases" - an explorative view of sarcoidosis and identification of the consequences for affected patients and relatives using qualitative interviews.Orphanet journal of rare diseases · 2023Article
- Is the internet a sufficient source of information on sarcoidosis?Frontiers in medicine · 2023Article
- Identifying a core outcome set for pulmonary sarcoidosis research - the Foundation for Sarcoidosis Research - Sarcoidosis Clinical OUtcomes Taskforce (SCOUT).Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG · 2022Article
- Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes.Diagnostics (Basel, Switzerland) · 2021Review
- Educational aspects of rare and orphan lung diseases.Respiratory research · 2021Review
- Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study.Orphanet journal of rare diseases · 2021Article
- Scout - sarcoidosis outcomes taskforce. A systematic review of outcomes to inform the development of a core outcome set for pulmonary sarcoidosis.Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG · 2021Article
- Comprehensive Care for Patients with Sarcoidosis.Journal of clinical medicine · 2020Review
- Predictors of cough-specific and generic quality of life in sarcoidosis patients.Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG · 2020Observational
- Correlation between exercise, personal income level and health-related quality of life in patients with newly diagnosed stable angina.Military Medical Research · 2019Article
- Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesSarcoidosis is a chronic, multisystem disease with often a major impact on quality of life. Information on unmet needs of patients and their partners is lacking. We assessed needs and perceptions of sarcoidosis patients and their partners.
methodsDuring patient information meetings in 2015 and 2017 in the Erasmus University Medical Center, we interviewed patients and partners using interactive voting boxes. Patients responded anonymously to 17 questions. Answers were projected directly on the screen in the room.
results210 patients and 132 partners participated. Sarcoidosis has a subjective significant impact on lives of both patients and partners. The vast majority of patients and partners feel regularly misunderstood because of the general unawareness of sarcoidosis. Many patients and partners experience anxiety. Three-quarters of patients would like to see more attention and support for their psychological problems. Additionally, more supportive care for partners of sarcoidosis patients is warranted. Interactive interviewing was considered educational (91%) and pleasant (84%). DISCUSSION: This study improves awareness of needs and perceptions of patients with sarcoidosis and their partners. Sarcoidosis leads to anxiety and psychological distress and impairs well-being of patients and their partners. Attention for psychological support, better disease education, and more supportive care for partners is warranted.
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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.