Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study

Gil, Juan; Funalot, Benoît; Verschueren, Annie; Danel-Brunaud, Véronique; Camu, William; Vandenberghe, N.; Desnuelle, Claude; Guy, Nathalie; Camdessanché, Jean‐Philippe; Cintas, Pascal; Carluer, Laurence; Pittion, Sophie; Guillaume, Nicolas; Corcia, Philippe; Fleury, Marie; Maugras, C.; Besson, Gérard; Masson, Gwendal Le; Couratier, Philippe

doi:10.1111/j.1468-1331.2008.02307.x

Cited by 150 publications

(85 citation statements)

References 22 publications

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“…1 Respiratory failure is the most common cause of death. 2,3 Noninvasive ventilation (NIV) improves survival and quality of life in ALS patients. [4][5][6] Tolerance is known to correlate with longer survival and improved quality of life.…”

Section: Introductionmentioning

confidence: 99%

Absence of Airway Secretion Accumulation Predicts Tolerance of Noninvasive Ventilation in Subjects With Amyotrophic Lateral Sclerosis

et al. 2013

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OBJECTIVE: To assess factors that predict good tolerance of noninvasive ventilation (NIV), in order to improve survival and quality of life in subjects with amyotrophic lateral sclerosis. METHODS: We conducted a prospective study in subjects with amyotrophic lateral sclerosis and requiring NIV. The primary end point was NIV tolerance at 1 month. Subjects, several of whom failed to complete the study, were classified as "tolerant" or "poorly tolerant," according to the number of hours of NIV use (more or less than 4 h per night, respectively). RESULTS: Eighty-one subjects, 73 of whom also attended the 1-month follow-up visit, participated over 34 months. NIV tolerance after the first day of utilization predicted tolerance at 1 month (77.6% and 75.3% of subjects, respectively). Multivariate analysis disclosed 3 factors predicting good NIV tolerance: absence of airway secretions accumulation prior to NIV onset (odds ratio 11.5); normal bulbar function at initiation of NIV (odds ratio 8.5); and older age (weakly significant, odds ratio 1.1). CONCLUSION: Our study reveals 3 factors that are predictive of good NIV tolerance, in particular the absence of airway secretion accumulation, which should prompt NIV initiation before its appearance.

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Section: Introductionmentioning

confidence: 99%

Absence of Airway Secretion Accumulation Predicts Tolerance of Noninvasive Ventilation in Subjects With Amyotrophic Lateral Sclerosis

et al. 2013

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“…It is therefore assumed that all patients diagnosed with the condition will eventually be identified via a DC, and that the incidence pattern for a given year will be reflected in the mortality pattern 2-4 years later. The late presentation is quite uniform in that three quarters of patients die from respiratory failure [30][31][32] . The homogenous profile of death from ALS facilitates the identification of cases and the coding of DC.…”

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confidence: 99%

Can Mortality Data Be Used to Estimate Amyotrophic Lateral Sclerosis Incidence?

et al. 2010

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Background: Because studies of the incidence of amyotrophic lateral sclerosis (ALS) have uncertain feasibility and high costs, mortality rates are often used to provide an estimate. We performed a systematic review of the literature concerning mortality related to ALS. We aimed to use well-known criteria of good epidemiological practice to assess the methodological quality of the studies. Methods: A Medline and ScienceDirect literature search was performed to identify studies on ALS mortality published from 1971 to 2009. The literature was examined following 6 criteria. Results: Of the 29 studies examined, almost all presented a clear definition of the population at risk, but 55% of the papers did not report on the accuracy of death certificates, and the use of both ‘underlying’ and ‘contributory’ causes of death was identified in only 41% of cases. When comparing ALS mortality data between calendar dates, the codes from the International Classification of Diseases were consistent overall, except in 3 studies. A majority of articles that compared mortality patterns between geographical regions or ethnic groups discussed the key issues of comparability of health care and equality of access. Overall, among the 29 ALS mortality studies, only 3 complied with all the criteria. In 2 of them, the mortality rates were highly consistent with available incidence data. Conclusion: Only few studies on mortality data followed a high-quality methodology. When studies complied with the criteria, they showed good accuracy with regard to incidence rates. The criteria used in this study could also be used to guide future studies based on mortality data.

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“…Previous reports have shown that the most common cause of death in patients with ALS is respiratory failure followed by other causes, including cardiac problems (myocardial infarction, arrhythmia), sepsis and malignancies [2,3,4,5]; however, knowledge about the causes of death in patients treated with tracheostomy-positive pressure ventilation (TPPV) is very limited. In this study, we investigated the causes of death of ALS patients on TPPV.…”

Section: Tablementioning

confidence: 99%

“…Conversely, it is reported that the frequency of TPPV-assisted ALS patients is 1.5–3.2% in western countries [2,8,9]; therefore, Japanese patients are more likely to undergo invasive ventilation. A better understanding of the cause of death of ALS patients on TPPV is required for patients and their caregivers to improve the decision-making process for TPPV induction and palliative care at the end of life.…”

Section: Tablementioning

confidence: 99%

Cause of Death in Japanese Patients with Amyotrophic Lateral Sclerosis on Tracheostomy-Positive Pressure Ventilation

et al. 2012

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Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study

Abstract: The information provided by this study helps to improve our understanding of the natural history of the disease and may help optimize the quality of care we can offer patients at the end of life.

Cited by 150 publications

References 22 publications

Absence of Airway Secretion Accumulation Predicts Tolerance of Noninvasive Ventilation in Subjects With Amyotrophic Lateral Sclerosis

Absence of Airway Secretion Accumulation Predicts Tolerance of Noninvasive Ventilation in Subjects With Amyotrophic Lateral Sclerosis

Can Mortality Data Be Used to Estimate Amyotrophic Lateral Sclerosis Incidence?

Cause of Death in Japanese Patients with Amyotrophic Lateral Sclerosis on Tracheostomy-Positive Pressure Ventilation

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