The effect of noninvasive ventilation on ALS patients and their caregivers

Mustfa, Naveed; Walsh, Eleanor; Bryant, Vanessa; Lyall, Rebecca; Addington‐Hall, Julia; Goldstein, Laura H.; Donaldson, Nora; Polkey, Michael I.; Moxham, John; Leigh, P. Nigel

doi:10.1212/01.wnl.0000208957.88534.11

Cited by 123 publications

(78 citation statements)

References 39 publications

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“…Current interventions are limited to slowing disease progression or palliating symptoms such as dysphagia, weight loss, and respiratory muscle weakness [3,4] and the recommended interventions, such as gastrostomy and noninvasive ventilation (NIV), tend to be required by people with ALS (pwALS) in later stages of the disease [3,5]. Gastrostomy has been shown to improve nutrition, and NIV can help relieve the symptoms experienced due to diaphragmatic weakness, interventions which have improved prognosis and quality of life [6][7][8][9] without increasing caregiver burden [7]. Rates of uptake for NIV in the UK may currently be low [10].…”

Section: Introductionmentioning

confidence: 99%

“…In addition, acceptance of gastrostomy is related to a lack of pleasure obtained from oral intake and the inability to eat independently [26]. In a broader context, prospective research has demonstrated significant burden and psychological distress in caregivers of pwALS [7,27,28], but the relationship with palliative interventions has not always been explored [27].…”

Section: Introductionmentioning

confidence: 99%

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Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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word count: 174 words 2 ABSTRACTThe objective was to identify factors associated with decisions made by patients with Amyotrophic Lateral Sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study.Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present.Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: i) patientcentric factors (including perceptions of control, acceptance and need, and aspects of fear); ii) external factors (including roles played by healthcare professionals, family, and information provision); and iii) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were interrelated. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.3

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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“…The models of telehealth described in this review are intensive and require a large number of specialist staff at considerable cost, but monitoring could become more automated, reducing staff burden and making systems more affordable. (59,60).…”

Section: Discussionmentioning

confidence: 99%

Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review

Hobson

Baird

Cooper

et al. 2016

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Results were reviewed and interpreted by all authors and all authors were involved in Results: Two applications were identified: telemedicine to facilitate video conferencing as an alternative to outpatient consultations and telehealth monitoring for patients with respiratory failure. One randomised controlled trial using telehealth in patients with respiratory failure including 22 patients with ALS was identified.Whilst rates of hospitalisation were reduced, overall mortality was unchanged and there were too few patients with ALS in the study to detect significant benefit.Conclusion: There is limited evidence to support use of telemedicine or telehealth in the care of patients with ALS. Future research needs to develop an understanding of the key beneficial aspects of the traditional specialist ALS service and how these factors could be delivered using technology. Successful evaluation and implementation of technologies to facilitate access to specialist care will only be possible if all the relevant impacts of an intervention are understood and measured.

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“…14,15,[27][28][29] NIV improved sleep quality shortly after initiation 27,29 and up to 10 months 27 or longer, 15,29 whereas daytime sleepiness decreased. 15,28 Subjects with bulbar involvement seemed to be less tolerant of NIV, but subjects who tolerated NIV, even those with severe bulbar involvement, seemed to achieve better sleep quality.…”

Section: Niv and Sleepmentioning

confidence: 98%

Hot Topics in Noninvasive Ventilation: Report of a Working Group at the International Symposium on Sleep-Disordered Breathing in Leuven, Belgium

et al. 2015

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During the last few decades, attention has increasingly focused on noninvasive ventilation (NIV) in the treatment of chronic respiratory failure. The University of Leuven and the University Hospitals Leuven therefore chose this topic for a 2-day working group session during their International Symposium on Sleep-Disordered Breathing. Numerous European experts took part in this session and discussed (1) NIV in amyotrophic lateral sclerosis (when to start NIV, NIV and sleep, secretion management, and what to do when NIV fails), (2) recent insights in NIV and COPD (high-intensity NIV, NIV in addition to exercise training, and NIV during exercise training), (3) monitoring of NIV (monitoring devices, built-in ventilator software, leaks, and asynchronies) and identifying events during NIV; and (4) recent and future developments in NIV (target-volume NIV, electromyography-triggered NIV, and autoregulating algorithms)

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The effect of noninvasive ventilation on ALS patients and their caregivers

Abstract: Respiratory muscle weakness has a greater impact on quality of life (QoL) than overall ALS severity. Noninvasive ventilation (NIV) improves QoL despite ALS progression. NIV has no impact on most aspects of caregiver QoL and does not significantly increase caregiver burden or stress.

Cited by 123 publications

References 39 publications

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review

Hot Topics in Noninvasive Ventilation: Report of a Working Group at the International Symposium on Sleep-Disordered Breathing in Leuven, Belgium

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