The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitative exploration of family carer and health professional experiences

Baxter, Susan; Baird, Wendy; Thompson, Sue; Bianchi, Stephen; Walters, Stephen J.; Lee, Ellen; Ahmedzai, Sam H; Proctor, Alison; Shaw, Pamela J.; McDermott, Christopher J.

doi:10.1177/0269216313478449

Cited by 53 publications

(73 citation statements)

References 18 publications

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“…For patients for whom supportive respiratory therapies are not appropriate or not desired, palliative management of dyspnea and secretions should be considered. 56 , 57 …”

Section: Long-term Management Of Established Neuromuscular Weaknessmentioning

confidence: 99%

Respiratory management of patients with neuromuscular disease: current perspectives

Pfeffer¹,

Povitz

2016

DNND

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Neuromuscular ventilatory weakness can be difficult to recognize because the symptoms can be nocturnal, nonspecific, or attributed to other conditions. The presence of respiratory muscle weakness suggests a number of possible heterogeneous conditions, including neurodegenerative, autoimmune, and genetic neuromuscular diseases. In some conditions, disease-modifying management exists, but in the absence of such intervention, supportive respiratory therapy can improve quality of life and survival. In this review, we discuss the differential diagnosis and diagnostic approach to chronic neuromuscular respiratory weakness. We also review the clinical assessment and management of respiratory failure in these conditions.

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“…For patients for whom supportive respiratory therapies are not appropriate or not desired, palliative management of dyspnea and secretions should be considered. 56 , 57 …”

Section: Long-term Management Of Established Neuromuscular Weaknessmentioning

confidence: 99%

Respiratory management of patients with neuromuscular disease: current perspectives

Pfeffer¹,

Povitz

2016

DNND

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“…Even in developed countries, attendance at MDCs is not universal (between 43 and 85%), and some patients may only be able to attend once (9). Community clinicians who provide care between visits have limited exposure to this rare disease so lack specialist experience and this can result in patients and carers experiencing significant difficulties (10)(11)(12)(13)(14)(15). Lack of coordinated care and advanced planning makes access to services such as palliative and social care more difficult (16).…”

Section: Introductionmentioning

confidence: 99%

The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design

Hobson

Baird

Partridge

et al. 2018

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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“…This suggests the need for further interventions to manage symptoms in patients with advanced CHF and further study of symptoms among other diseases. The growing number of studies on the use of palliative care among persons with ALS (Baxter et al, 2013; Maessen et al, 2009) and CHF (Kaasalainen et al, 2013; Lemond & Allen, 2011; Swetz et al, 2013) offer guidance on comprehensive approaches to symptom management. Further research is needed to examine the challenges in symptom management across transitions in care from the acute to long-term or home settings.…”

Section: Discussionmentioning

confidence: 99%

Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF

Nolan

Heinze

et al. 2015

Applied Nursing Research

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Purpose National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF). Methods The present study is a cross-sectional examination of symptoms and QOL measured using the McGill QOL Questionnaire, among 147 participants. Results Forty one percent of participants had advanced cancer, 22% had ALS, and 37% had advanced CHF. A total of 266 symptoms were reported, with the common symptom categories being discomfort/pain, weakness/fatigue/sleep, and respiratory. Participants with CHF had the highest mean symptom severity and the lowest QOL. Conclusion Clinicians should be aware and attentive for symptoms other than pain in patients with advanced illness. Studies on diseases other than cancer, such as CHF and ALS, are important to improve symptom management in all disease groups.

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The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitative exploration of family carer and health professional experiences

Cited by 53 publications

References 18 publications

Respiratory management of patients with neuromuscular disease: current perspectives

Respiratory management of patients with neuromuscular disease: current perspectives

The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design

Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF

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