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Decision-making for tracheostomy in amyotrophic lateral sclerosis (ALS): a retrospective study
Abstract
BACKGROUND: ALS patients should discuss the issue of tracheostomy before the onset of terminal respiratory failure. While the process of shared decision-making is desirable, there are few data on the practical application of this real-life situation. AIM OF THE STUDY: To determine how a decision-making process is actually carried out, we analysed the episodes of acute respiratory failure preceding tracheostomy. METHODS: We studied the charts of a group of ALS patients after tracheostomy. An interview focusing on the existence of anticipated directives was carried out. Tracheostomies were classified as planned or unplanned according to the presence of a decision plan. RESULTS: A total of 209 ALS patients were cared for during a three-year period. Of these patients, 34 (16%) were tracheotomised. In 38% of cases, tracheostomy was planned, 41% were unplanned, and 21% remained undiagnosed. CONCLUSIONS: A minority of ALS patients make a voluntary decision for tracheostomy before the procedure is conducted. The advising process of care still presents limits that have been thus far poorly addressed. In the future, we will need to develop guidelines for the timing and content of the shared-decision making process.
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“Indeed, they need to receive comprehensive information on living with HMV, tailored to their needs [14–16], especially about adverse events [17].”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [16]
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References 20 · Cited by 24
Research works printed but not linked: 1
- Heritier Barras AC, 2013, Swiss Med Wkly, 143, w13830
Metadata
- Authors
- Ceriana, P., Surbone, S., Segagni, D., Schreiber, A., & Carlucci, A.
- Affiliations
- Istituti Clinici Scientifici Maugeri (IT)
- Azienda Socio Sanitaria Territoriale di Pavia (IT)
- Corresponding author
- Ceriana, Piero
- Venue
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
- Publisher
- Informa UK Limited
- Published
- 2017-04-29
- Volume
- 18
- Issue
- 7-8
- Pages
- 492-497
- ISSN
- 2167-8421 (ISSN-L)
- 2167-9223
- OpenAlex
- W2607647686
- Cited by
- 24
- References
- 20
- Citations by year
- 2025: 1 · 2024: 2 · 2023: 7 · 2022: 4 · 2020: 3 · 2019: 4 · 2018: 3
- FWCI
- 2.56
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (publishedVersion)
- PubMed (publishedVersion)
- IrInSubria (University of Insubria) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Tracheal and airway disorders
- Keywords
- amyotrophic lateral sclerosis, tracheostomy, shared decision-making, acute respiratory failure, advance directives, tracheostomy timing, end-of-life care
- MeSH terms
- Clinical Decision-Making, Amyotrophic Lateral Sclerosis, Decision Making, Female, Humans, Italy, Male, Middle Aged, Respiratory Insufficiency, Retrospective Studies, Tracheostomy, Utilization Review, Comorbidity, Prevalence, Risk Assessment, Patient Preference
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- CoChat. (2026). Citation check: Decision-making for tracheostomy in amyotrophic lateral sclerosis (ALS): a retrospective study. https://app.cochat.ai/papers/10.1080/21678421.2017.1317812
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- Ceriana, P., Surbone, S., Segagni, D., Schreiber, A., & Carlucci, A. (2017). Decision-making for tracheostomy in amyotrophic lateral sclerosis (ALS): a retrospective study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. https://doi.org/10.1080/21678421.2017.1317812
