Use of Non-invasive Ventilation in Neuromuscular Disease

Sharma, Rahul; Wolfe, Lisa F.

doi:10.1007/s40675-017-0097-9

Cited by 9 publications

(7 citation statements)

References 91 publications

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Section: Discussionmentioning

confidence: 99%

“…International research has identified the difficulties in establishing NIV clinical need and therapeutic dosage [ 4 ]. While these issues and others, such as variable education to support initiation, establishment of home NIV, cleaning and maintenance have been reported previously, these papers have not explicitly identified these experiences as examples of system-level issues for people with NMD [ 4 , 17 , 19 , 34 , 35 ]. Ensuring that health professionals provide a minimum standard of education to patients and caregivers is associated with greater tolerance of NIV, decreased burden on caregivers and enhanced therapeutic adherence [ 17 , 22 , 34 ].…”

Section: Discussionmentioning

confidence: 99%

“…This can elicit symptoms of fatigue, headaches and day somnolence [ 3 ]. With disease progression, respiratory failure may also occur during the daytime, severely restricting activities of daily living and resulting in repeated hospital admissions for respiratory infections [ 3 , 4 ]. Such failure can cause serious health consequences and represents a major source of morbidity and mortality in people with NMD [ 4 , 5 ]…”

Section: Introductionmentioning

confidence: 99%

“…To date, limited international research has explored why variations in access to NIV exist. Researchers in the USA have noted the complexity of determining NIV therapeutic needs during the variable period of nocturnal hypoventilation preceding daytime hypercapnia, compounded by a lack of a definitive clinical test [ 4 ]. Evidence, predominantly from Scandinavia and the UK, has suggested that funding and regional resource allocation may negatively affect the training and confidence of health professionals and the variety of equipment options health professionals can try when establishing and maintaining NIV therapy [ 17 , 19 , 20 , 21 ].…”

Section: Introductionmentioning

confidence: 99%

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Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand

Perry¹,

Jones

Jenkins³

et al. 2023

IJERPH

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Non-invasive ventilation (NIV) is a critical therapy for many patients with neuromuscular disorders (NMD), supporting those with respiratory failure to achieve adequate respiration and improve their quality of life. The aim of this study was to explore the experiences of access to, consent, uptake, maintenance and safe use of non-invasive ventilation by people with NMD. Semi-structured individual interviews were conducted with 11 people with NMD, each using NIV for more than 12 months. A critical realism ontological paradigm with contextualism epistemology guided the Reflexive Thematic Analysis. An Equity of Health Care Framework underpinned the analysis. Three themes were interpreted: Uptake and informed consent for NIV therapy; Practicalities of NIV; and Patient-clinician relationships. We identified issues at the system, organization and health professional levels. Conclusions: We recommend the development of national service specifications with clear standards and dedicated funding for patients with NMD and call on the New Zealand Ministry of Health to proactively investigate and monitor the variations in service delivery identified. The specific areas of concern for patients with NMD suggest the need for NMD-related NIV research and service provision responsive to the distinct needs of this population.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand

Perry¹,

Jones

Jenkins³

et al. 2023

IJERPH

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“…The prevalence of neuromuscular disorders in Australia and New Zealand is estimated to lie between 23 and 160 per 100 000 population 1,2 . Progressive weakening of the respiratory muscles responsible for inspiration, coughing, and maintaining upper airway clearance can lead to chronic respiratory failure, 3 reducing quality of life and accounting for 80% of the morbidity and mortality associated with some neuromuscular disorders 4,5 …”

mentioning

confidence: 99%

Non‐invasive ventilation for people with neuromuscular disorders in Australia and New Zealand: a qualitative study of clinician perspectives

Perry

Jones

Devan

et al. 2023

Medical Journal of Australia

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ObjectivesTo explore the experiences of Australian and New Zealand clinicians with respect to care pathways, their awareness and use of non‐invasive ventilation guidelines, and their perspectives on delivering quality non‐invasive ventilation services to people with neuromuscular disorders.Design, setting, participantsQualitative study; semi‐structured focus groups and individual interviews with Australian and New Zealand clinicians who provide non‐invasive ventilation services to people with neuromuscular disorders, recruited from participants at a 2017 sleep medicine conference. Interviews were conducted during 1 October 2017 – 31 May 2018.Main outcome measuresMajor themes identified by an iterative, semantic, and inductive analysis.ResultsA total of 28 participants attended the four focus group sessions and five individual interviews; fourteen each from New Zealand and Australia, seventeen women and eleven men, eighteen physicians and ten other clinicians. Two major themes were identified: decision making for current practice, and resource constraints. Participants noted variable use of clinical guidelines and limited training to meet the needs of people with neuromuscular disorders who require non‐invasive ventilation. They described a lack of dedicated funding, unstructured care pathways, equipment supply levels that do not meet need, low staff‐to‐patient ratios and staff shortages, and the inability to deliver quality multidisciplinary care. The need for clinical guidelines and service specifications was highlighted as requisite for reducing variation in clinical care.ConclusionsSystemic factors influence the needs‐based provision of non‐invasive ventilation for people with neuromuscular disorders. Development of clinical guidelines for Australia and New Zealand, dedicated funding for respiratory services for people with neuromuscular disorders, and specialist clinician training are important for equitable and high quality non‐invasive ventilation care.

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Late respiratory alkalosis during home mechanical ventilation in amyotrophic lateral sclerosis

García¹,

Díaz²,

Antón³

2023

Respiratory Medicine Case Reports

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Use of Non-invasive Ventilation in Neuromuscular Disease

Cited by 9 publications

References 91 publications

Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand

Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand

Non‐invasive ventilation for people with neuromuscular disorders in Australia and New Zealand: a qualitative study of clinician perspectives

Late respiratory alkalosis during home mechanical ventilation in amyotrophic lateral sclerosis

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