A range of research and clinical guidelines were used to guide the development of myBreathing.
You can read a simple summary of the main research evidence around NIV in External Resources.
Research that has informed myBreathing:
Baxter S, Baird W, Thompson S, Bianchi S, et al (2013) The initiation of non-invasive ventilation for patients with motor neuron disease: Patient and carer perceptions of obstacles and outcomes. Amyotrophic Lateral Sclerosis and Frontal Degeneration. 14(2):105-110
Baxter, S, Baird W, Thompson S, Bianchi S, et al (2013) The Impact on the Family Carer of Motor Neurone Disease and Intervention with Noninvasive Ventilation. Journal of Palliative Medicine. 16(12):1602-1609
Baxter S, Baird W, Thompson S, Bianchi S, et al (2013) 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. Palliative Medicine. 27(6):516-523
Baxter S, Johnson M, Clowes M, O’Brien D et al. (2019) Optimizing the noninvasive ventilation pathway for patients with amyotrophic lateral sclerosis/motor neuron disease: a systematic review. Amyotrophic Lateral Sclerosis and Frontal Degeneration 20(7-8):461-472
Berlowitz D, Howard M, Fiore Jr J, Vander Hoorn S, et al. (2016) Identifying who will benefit from non-invasive ventilation in amyotrophic lateral sclerosis/motor neurone disease in a clincial cohort. Journal of Neurology, Neurosurgery and Psychiatry. 87:280-286.
Bourke SC, Tomlinson M, Williams TL, et al. (2006) Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: A randomised controlled trial. Lancet Neurology 5(2):140–7.
O’Brien D, Stavroulakis T, Baxter S, Norman P, et al. (2019) The optimisation of non-invasive ventilation in amyotrophic lateral sclerosis: A systematic review. European Respiratory Journal. 54(3):1900261
Clinical guidelines that have informed myBreathing:
Association for Palliative Medicine (2015) Position statement: Withdrawal of ventilatory support at the request of an adult patient with neurological or neuro-muscular disease. Online here.
Association for Palliative Medicine (2015) Withdrawal of ventilatory support at the request of a patient with motor neurone disease: Guidance for professionals. Association for Palliative Medicine for Great Britain and Northern Ireland: Southhampton. Version 1.0
National Institute for Health and Care Excellence (2016) NICE Guideline [NG42] Motor neurone disease: assessment and management. Online here.
Care information for health professionals developed by the MND Association that has informed myBreathing:
MND Association (2015) Motor neurone disease (MND) in acute, urgent and emergency care. Online here.
MND Association (2017) Managing respiratory symptoms in motor neurone disease. Online here.
MND Association (2019) A professionals guide to end of life care in motor neurone disease. Online here.
MND Association (2019) MND respiratory pathway. Online here.
MND Association (2019) Just in case kit for motor neurone disease. Online here.
Plus the MND Association’s care information provided for people living with MND/ALS that are listed in the External Resources section.