ArticleOrphanet journal of rare diseases2015
Quality of life in patients with locked-in syndrome: Evolution over a 6-year period.
Article in Orphanet journal of rare diseases, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 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
37 citing papers in PubMed.
- Design and Performance Evaluation of a Low-Cost High-SNR EOG Sensing System for Arabic Locked-In Syndrome Communication.Sensors (Basel, Switzerland) · 2026Article
- Implanted brain-computer interface functionality during nighttime in late-stage amyotrophic lateral sclerosis.Scientific reports · 2026Article
- Multidisciplinary rehabilitation and eye tracker-assisted communication in locked-in syndrome: a case report and literature review.Frontiers in human neuroscience · 2026Article
- Disability, Quality of Life, and Vitalism in End-of-Life Care.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2025Article
- Real-time decoding of full-spectrum Chinese using brain-computer interface.Science advances · 2025Article
- Emerging issues in the management of patients with disorders of consciousness.Journal of neurology · 2025Review
- Learning to operate an imagined speech Brain-Computer Interface involves the spatial and frequency tuning of neural activity.Communications biology · 2025Article
- Brain-Computer Interfaces Using Flexible Electronics: An a-IGZO Front-End for Active ECoG Electrodes.Advanced science (Weinheim, Baden-Wurttemberg, Germany) · 2025Article
- Assessing consciousness in patients with locked-in syndrome using their EEG.Frontiers in neuroscience · 2025Article
- Chrono-EEG dynamics influencing hand gesture decoding: a 10-hour study.Scientific reports · 2024Article
- A review on the performance of brain-computer interface systems used for patients with locked-in and completely locked-in syndrome.Cognitive neurodynamics · 2024Review
- Locked-in syndrome: A qualitative study of a life story.Brain and behavior · 2024Article
- Cognitive Motor Dissociation: Gap Analysis and Future Directions.Neurocritical care · 2024Article
- Update on How to Approach a Patient with Locked-In Syndrome and Their Communication Ability.Brain sciences · 2024Review
- The ethical significance of user-control in AI-driven speech-BCIs: a narrative review.Frontiers in human neuroscience · 2024Review
- Boosting brain-computer interfaces with functional electrical stimulation: potential applications in people with locked-in syndrome.Journal of neuroengineering and rehabilitation · 2023Review
- Disambiguating Consciousness in Clinical Settings.Neurology · 2023Article
- Demographic, Medical, and Clinical Characteristics of a Population-Based Sample of Patients With Long-lasting Locked-In Syndrome.Neurology · 2023Article
- Article
- Locked-in syndrome revisited.Therapeutic advances in neurological disorders · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundImproved knowledge of the quality of life (QoL) of locked-in syndrome (LIS) patients have implications for managing their care, and assists clinicians in choosing the most appropriate interventions. We performed a survey of a population of LIS patients to describe the course of the QoL of LIS patients over a 6-year period and to determine the potential predictive factors of QoL changes over time.
methodThis is a study performed over a 6-year period in patients with a LIS diagnosis. Questionnaires were sent in 2007 and 2013. The following data were recorded: i) sociodemographic data; ii) clinical data related to LIS, physical/handicap status, psychological status; iii) self-reported QoL: Anamnestic Comparative Self-Assessment (ACSA); iv) Integration in life: French Reintegration to Normal Living Index (RNLI).
resultsAmong the 67 patients included in 2007, 39 (58 %) patients returned their questionnaire in 2013. The LIS etiology was stroke in 51 individuals. The QoL of the patients was relatively satisfactory compared to populations in other severe conditions. Twenty-one (70 %) individuals reported a stable/improved QoL between 2007 and 2013. The physical/handicap statuses in 2007 and 2013 were not related to the QoL 6 years later, with the exception of one communication parameter: the individuals who used yes-no code reported significantly lower QoL levels than those who did not in 2013. DISCUSSION: In opposition to a widespread opinion, LIS persons report a relatively satisfactory QoL level that stays stable over time, suggesting that life with LIS is worth living. Preservation of autonomy and communication may help them to live as normal life as possible.
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.