Clinical characteristics of long‐term survival with noninvasive ventilation and factors affecting the transition to invasive ventilation in amyotrophic lateral sclerosis

Hirose, Takahiko; Kimura, Fumiharu; Tani, Hiroki; Ota, Shin; Tsukahara, Akihiro; Sano, Eri; Shigekiyo, Taro; Nakamura, Yoshitsugu; Kakiuchi, Kensuke; Motoki, Mikiko; Unoda, Kiichi; Ishida, Shunichi; Nakajima, Hideto; Arawaka, Shigeki

doi:10.1002/mus.26149

Cited by 27 publications

(19 citation statements)

References 39 publications

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“…The fatal outcome can be significantly impacted through respiratory support. Hirose et al, in their study, “Clinical characteristics of long‐term survival with noninvasive ventilation and factors affecting the switch to invasive ventilation in ALS,” appearing in this issue of Muscle & Nerve , compare ALS patients who receive noninvasive ventilation (NIV), tracheostomy with invasive ventilation (TIV), and no ventilator support. Their study examines the frequency of transition to and between ventilator support in successive patients treated at 1 Japanese center.…”

contrasting

confidence: 52%

“…7 The study by Hirose et al highlights the shifting attitudes in ventilator use since those recommendations were made. 1 There was an increase in TIV use until 2004, which the authors point out is perhaps due to an increase in universal insurance coverage, but after 2004 there was a consistent decline in TIV use until 2015 (the end of the study). The authors state that after 2000, NIV use increased, and the decreased transition from NIV to TIV most likely accounted for this decline in TIV use.…”

mentioning

confidence: 88%

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Navigating a fine balance in the treatment of amyotrophic lateral sclerosis

Greene

Lomen‐Hoerth

2018

Muscle and Nerve

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contrasting

confidence: 52%

mentioning

confidence: 88%

Navigating a fine balance in the treatment of amyotrophic lateral sclerosis

Greene

Lomen‐Hoerth

2018

Muscle and Nerve

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“…[9][10][11] It has also been shown that NIV might also delay respiratory decline. [9][10][11] It has also been shown that NIV might also delay respiratory decline.…”

Section: Ventilation Parametersmentioning

confidence: 99%

Non-invasive ventilation and hypercapnia-associated symptoms in amyotrophic lateral sclerosis

2018

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Objectives During the course of amyotrophic lateral sclerosis (ALS), progressive weakness of respiratory muscles leads to chronic hypercapnia which causes various symptoms like sleep disturbances, daytime fatigue, and depression. Non‐invasive ventilation (NIV) improves survival and quality of life, but little is known about its effect on these specific symptoms, in particular during the later course of disease. Our aim was to evaluate the short‐ and long‐term effects of NIV on hypercapnia‐associated symptoms in ALS. Material and Methods We prospectively analyzed sleep disturbance, daytime fatigue, and depression using standardized scales (Pittsburgh sleep quality index [PSQI], stanford sleepiness scale [SSS], Beck depression inventory [BDI], and Clinical hypoventilation score [CHS]) in 58 patients with NIV. Follow‐up was done every 3 months up to a maximum of 24 months. Results We found significant improvements of all outcome parameters except BDI within the first three months after NIV initiation. The median PSQI improved from 6.5 (95% CI: 5.0‐8.5) to 6.0 (95% CI: 4.5‐7.0; P = 0.042), the SSS from 3.0 (95% CI: 2.0‐4.0) to 2.0 (95% CI: 2.0‐3.0; P = 0.004), and the CHS from 22.0 (95% CI: 19.5‐25.0) to 18.0 points (95% CI: 12.0‐23.5; P = 0.013). Patients with bulbar and spinal onset were not significantly different, and positive effects were long‐lasting. Conclusions Our data show that NIV improves hypercapnia‐associated symptoms within the first 3 months after initiation in spinal as well as bulbar patients, and that beneficial effects are long‐lasting.

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“…They found that major factors related to IMV avoidance were female gender, NIV use longer than 6 months, bulbar onset, and absence of spouse/partner [139]. It is also important to consider that these patients get used to NIV, and over time they become dependent on it, so it becomes difficult to opt for IMV [140].…”

Section: Ethical Dilemmasmentioning

confidence: 99%

Long-Term Ventilation in Neuromuscular Patients: Review of Concerns, Beliefs, and Ethical Dilemmas

Crimi

Pierucci²,

Carlucci

et al. 2019

Respiration

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Background: Noninvasive mechanical ventilation (NIV) is an effective treatment in patients with neuromuscular diseases (NMD) to improve symptoms, quality of life, and survival. Summary: NIV should be used early in the course of respiratory muscle involvement in NMD patients and its requirements may increase over time. Therefore, training on technical equipment at home and advice on problem solving are warranted. Remote monitoring of ventilator parameters using built-in ventilator software is recommended. Telemedicine may be helpful in reducing hospital admissions. Anticipatory planning and palliative care should be carried out to lessen the burden of care, to maintain or withdraw from NIV, and to guarantee the most respectful management in the last days of NMD patients’ life. Key Message: Long-term NIV is effective but challenging in NMD patients. Efforts should be made by health care providers in arranging a planned transition to home and end-of-life discussions for ventilator-assisted individuals and their families.

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Clinical characteristics of long‐term survival with noninvasive ventilation and factors affecting the transition to invasive ventilation in amyotrophic lateral sclerosis

Abstract: This study confirmed a positive survival effect with NIV, which was less effective in patients with bulbar dysfunction. Additional studies are required to determine the best timing for using NIV with ALS in patients with bulbar dysfunction.

Cited by 27 publications

References 39 publications

Navigating a fine balance in the treatment of amyotrophic lateral sclerosis

Navigating a fine balance in the treatment of amyotrophic lateral sclerosis

Non-invasive ventilation and hypercapnia-associated symptoms in amyotrophic lateral sclerosis

Long-Term Ventilation in Neuromuscular Patients: Review of Concerns, Beliefs, and Ethical Dilemmas

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