Tracheostomy and invasive ventilation in Japanese ALS patients: Decision-making and survival analysis: 1990–2010

Tagami, Muneyoshi; Kimura, Fumiharu; Nakajima, Hideto; Ishida, Shunichi; Fujiwara, Shinya; Doi, Yoshimitsu; Hosokawa, Takafumi; Yamane, Kazushi; Unoda, Kiichi; Hirose, Takahiko; Tani, Hiroki; Ota, Shin; Ito, Takumi; Sugino, Masakazu; Shinoda, Keiichi; Hanafusa, Toshiaki

doi:10.1016/j.jns.2014.06.047

Cited by 71 publications

(69 citation statements)

References 42 publications

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“…The oculomotor limitation in ALS patients with TIV is initially with a supranuclear mechanism (30-32), but in the advanced stage of TLS the brainstem oculomotor nucleus is also involved neuropathologically (9,33), and is the focus survival, the disease progression never stops and often shows a wide and multisystem distribution of neurodegenerative lesions spreading to areas other than the motor system (9). Our patients with TIV showed much longer survival lengths than previously reported (Table II) (23)(24)(25)(26)(27)(28), and we needed predictors not only for survival but also to aid in the maintenance of care interventions. Seriously disabled patients with TIV cannot be evaluated even with the extended version of ALSFRS-R (29).…”

Section: Discussionmentioning

confidence: 72%

Predictors of impaired communication in amyotrophic lateral sclerosis patients with tracheostomy-invasive ventilation

Nakayama

Shimizu

Mochizuki

et al. 2015

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Predictors of communication impairment in patients with amyotrophic lateral sclerosis (ALS) using tracheostomy-invasive ventilation (TIV) were investigated. Seventy-six ALS patients using TIV were enrolled and classified into three subgroups of communication ability: patients who could communicate with communication devices (Stage I), patients who had difficulty with communication (Stage II, III, or IV), and patients who could not communicate by any means (Stage V). Predictors of communication impairment were analysed by the Cox proportional hazard model. Results demonstrated that there were no significant differences in disease duration between subgroups. Within 24 months after disease onset, patients who needed TIV and tube feeding, developed oculomotor impairment or became totally quadriplegic and progressed from Stage I to II and V significantly earlier. Multivariate analyses revealed that within 24 months from onset, the need for TIV and progression to total quadriplegia were significant events in patients who progressed to Stage II, whereas the development of oculomotor limitation was significant in patients who progressed to Stage V. In conclusion, TIV, impaired oculomotor movement and total quadriplegia are predictors of severe communication impairment. Rapid disease progression might indicate future communication impairment after the use of TIV. We highly recommend early detection of impaired communication and identification of the best methods of communication.

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Section: Discussionmentioning

confidence: 72%

Predictors of impaired communication in amyotrophic lateral sclerosis patients with tracheostomy-invasive ventilation

Nakayama

Shimizu

Mochizuki

et al. 2015

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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“…Even if it had been, it could not have accommodated other aspects of ventilator support that are culturally influenced (22), such as the use of 24-hour tracheostomy ventilation (T-IPPV). It is anecdotally accepted that patients with ALS receiving T-IPPV and enteral feeding live longer and may die for reasons other than ALS (23); unsurprisingly, the overall burden of disease involvement may be predictive in T-IPPV users (24).…”

Section: Critique Of the Methodsmentioning

confidence: 99%

Respiratory Muscle Strength as a Predictive Biomarker for Survival in Amyotrophic Lateral Sclerosis

Polkey

Lyall

Yang

et al. 2017

Am J Respir Crit Care Med

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Rationale: Biomarkers for survival in amyotrophic lateral sclerosis (ALS) would facilitate the development of novel drugs. Although respiratory muscle weakness is a known predictor of poor prognosis, a comprehensive comparison of different tests is lacking.Objectives: To compare the predictive power of invasive and noninvasive respiratory muscle strength assessments for survival or ventilator-free survival, up to 3 years.Methods: From a previously published report respiratory muscle strength measurements were available for 78 patients with ALS. Time to death and/or ventilation were ascertained. Receiver operating characteristic analysis was used to determine the cutoff point of each parameter.Measurements and Main Results: Each respiratory muscle strength assessment individually achieved statistical significance for prediction of survival or ventilator-free survival. In multivariate analysis sniff trans-diaphragmatic and esophageal pressure, twitch trans-diaphragmatic pressure (Tw Pdi), age, and maximal static expiratory mouth pressure were significant predictors of ventilationfree survival and Tw Pdi and maximal static expiratory mouth pressure for absolute survival. Although all measures had good specificity, there were differing sensitivities. All cutoff points for the VC were greater than 80% of normal, except for prediction of 3-month outcomes. Sequential data showed a linear decline for direct measures of respiratory muscle strength, whereas VC showed little to no decline until 12 months before death/ventilation. Conclusions:The most powerful biomarker for mortality stratification was Tw Pdi, but the predictive power of sniff nasal inspiratory pressure was also excellent. A VC within normal range suggested a good prognosis at 3 months but was of little other value.Keywords: amyotrophic lateral sclerosis; survival; diaphragm; maximal inspiratory pressure; sniff nasal inspiratory pressure Author Contributions: All authors contributed to the concept of the study, critically reviewed the manuscript, and approved this submission for publication. R.A.L. made the original measurements and reviewed the source data to create the material for the present analysis. K.Y. and E.J. undertook statistical analysis of the survival data to provide the analysis results for this paper. M.I.P. reviewed the source data with R.A.L. to create the material for the present analysis and prepared the first and subsequent draft of the manuscript. P.N.L. and J.M. were supervisors for the neurologic and respiratory muscle aspects, respectively, of the original data collection.

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“…The group was divided into two, with 80 among those analysed between 1990 and 1998 and 80 between 1999 and 2010. The rate of tracheostomy ventilation use increased from 28% in the first group to 38% in the second group 16. The authors suggest that reasons for the rising uptake of tracheostomy ventilation in Japan include religious and cultural beliefs and values, the fact that the Japanese government funds all cost of treatment and improved understanding of MND among healthcare professionals 16.…”

Section: Discussionmentioning

confidence: 97%

“…The frequency of tracheostomy ventilation in MND patients in Japan is high and rising 16. In a study between 1990 and 2010, data for 160 patients were analysed.…”

Section: Discussionmentioning

confidence: 99%

Withdrawal of invasive ventilation in a patient with motor neurone disease and total locked-in syndrome

Gleeson

Johnson

2017

Pract Neurol

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Withdrawing invasive ventilation from a person with motor neurone disease who lacks the relevant mental capacity raises ethical issues such as the withdrawal of life-sustaining treatment and establishing best interests. There is little available information on providing optimal symptom management to these patients during the withdrawal process. We describe a man with motor neurone disease who also had total locked-in syndrome at the time of ventilation withdrawal, and we document the legal, ethical, emotional and symptom control issues encountered in supporting him.

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Tracheostomy and invasive ventilation in Japanese ALS patients: Decision-making and survival analysis: 1990–2010

Cited by 71 publications

References 42 publications

Predictors of impaired communication in amyotrophic lateral sclerosis patients with tracheostomy-invasive ventilation

Predictors of impaired communication in amyotrophic lateral sclerosis patients with tracheostomy-invasive ventilation

Respiratory Muscle Strength as a Predictive Biomarker for Survival in Amyotrophic Lateral Sclerosis

Withdrawal of invasive ventilation in a patient with motor neurone disease and total locked-in syndrome

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