Causes and place of death in Italian patients with amyotrophic lateral sclerosis

Spataro, Rossella; Re, Marianna Lo; Piccoli, Tommaso; Piccoli, Federico; Bella, Vincenzo La

doi:10.1111/j.1600-0404.2009.01290.x

Cited by 89 publications

(65 citation statements)

References 27 publications

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“…A question arises of why, besides the establishment of mainly clinically-based criteria for the diagnosis of ALS [6] and the spread of information about the disease, the diagnostic delay is still about one year, that is nearly one-third of the natural history of the disease [1]. Furthermore, being first observed by a neurologist does not seem to shorten the diagnostic delay.…”

Section: Independent Variablementioning

confidence: 99%

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Factors affecting the diagnostic delay in amyotrophic lateral sclerosis

Cellura

Spataro

Taiello

et al. 2012

Clinical Neurology and Neurosurgery

105

101

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a b s t r a c tBackground: Although amyotrophic lateral sclerosis (ALS) is a relentlessly progressive disorder, early diagnosis allows a prompt start with the specific drug riluzole and an accurate palliative care planning. ALS at onset may however mimic several disorders, some of them treatable (e.g., multifocal motor neuropathy) or epidemiologically more frequent (e.g., cervical myelopathy). Objective: To study the delay from onset to diagnosis in a cohort of ALS patients and to the variables that may affect it. Methods: We performed a retrospective analysis of the diagnostic delays in a cohort of 260 patients affected by ALS (M/F = 1.32) followed at our tertiary referral ALS Center between 2000 and 2007.Results: The median time from onset to diagnosis was 11 months (range: 6-21) for the whole ALS cohort, 10 months (range: 6-15) in bulbar-onset (n = 65) and 12 months (range: 7-23) in spinal-onset (n = 195) patients (p = 0.3). 31.1% of patients received other diagnoses before ALS and this led to a significant delay of the correct diagnosis in this group (other diagnoses before ALS, n = 81: median delay, 15 months [9.75-24.25] vs ALS, n = 179, median delay, 9 months [6-15.25], p < 0.001). Conclusions: The diagnostic delay in ALS is about one year, besides the growing number of tertiary centres and the spread of information about the disease through media and internet. Cognitive errors based on an incorrect use of heuristics might represent an important contributing factor. Furthermore, the length of the differential diagnosis from other disorders and delays in referral to the neurologist seems to be positively associated with the delay in diagnosis.

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Section: Independent Variablementioning

confidence: 99%

“…Death usually occur within 3-5 years after onset, the main cause being the respiratory failure [1]. Although the established pharmacological therapy for ALS, i.e.…”

Section: Introductionmentioning

confidence: 99%

Factors affecting the diagnostic delay in amyotrophic lateral sclerosis

Cellura

Spataro

Taiello

et al. 2012

Clinical Neurology and Neurosurgery

105

101

View full text Add to dashboard Cite

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“…Several studies have highlighted the use of NIV in ALS patients, and have documented benefits on survival and quality of life [9,14,21]. Recent evidence shows the need to improve comfort and synchrony for a better NIV compliance.…”

Section: Discussionmentioning

confidence: 99%

“…Others variables beyond number of hours/day, namely the ventilation settings of NIV equipment, need be evaluated about their potential role on functional and survival outcomes, and it has never been published. In addition, recent studies have suggested other causes of death in ALS [6][7][8][9][10][11], which reinforces the need to clarify whether respiratory disturbances and discomfort with NIV are present near the time of death, and whether they could possibly be amenable to corrections. We aimed to investigate the prognostic factors for functional decline among ALS patients under NIV, considering all variables recorded by the equipment software [12] from initial adaptation until to death or end of study.…”

Section: Introductionmentioning

confidence: 99%

Can Non-invasive Ventilation Settings Predicts Functional and Survival Outcome in ALS Patients?

Acm¹,

Pinto²,

Pinto³

2017

J Community Med Health Educ

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“…Death frequently occurs within 3-5 years from onset, mostly because of respiratory failure (Spataro et al, 2010).…”

Section: Introductionmentioning

confidence: 99%

Reaching and grasping a glass of water by locked-in ALS patients through a BCI-controlled humanoid robot

Spataro¹,

Sorbello²,

Tramonte³

et al. 2015

Journal of the Neurological Sciences

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Locked-in Amyotrophic Lateral Sclerosis (ALS) patients are fully dependent on caregivers for any daily need. At this stage, basic communication and environmental control may not be possible even with commonly used augmentative and alternative communication devices. Brain Computer Interface (BCI) technology allows users to modulate brain activity for communication and control of machines and devices, without requiring a motor control. In the last several years, numerous articles have described how persons with ALS could effectively use BCIs for different goals, usually spelling. In the present study, locked-in ALS patients used a BCI system to directly control the humanoid robot NAO (Aldebaran Robotics, France) with the aim of reaching and grasping a glass of water. Four ALS patients and four healthy controls were recruited and trained to operate this humanoid robot through a P300-based BCI. A few minutes training was sufficient to efficiently operate the system in different environments. Three out of the four ALS patients and all controls successfully performed the task with a high level of accuracy. These results suggest that BCI-operated robots can be used by locked-in ALS patients as an artificial alter-ego, the machine being able to move, speak and act in his/her place.

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Causes and place of death in Italian patients with amyotrophic lateral sclerosis

Cited by 89 publications

References 27 publications

Factors affecting the diagnostic delay in amyotrophic lateral sclerosis

Factors affecting the diagnostic delay in amyotrophic lateral sclerosis

Can Non-invasive Ventilation Settings Predicts Functional and Survival Outcome in ALS Patients?

Reaching and grasping a glass of water by locked-in ALS patients through a BCI-controlled humanoid robot

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