Barry, Caroline, Farquhar, Morag, Hawkes, Matthew, Massey, Charlotte and Cross, Jane L. (2025) Understanding the complexity of living with, and managing, secretions in motor neurone disease/amyotrophic lateral sclerosis (MND/ALS/ALS): Protocol for a complex intervention systematic review. BMJ Open, 15 (10). ISSN 2044-6055
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Abstract
Motor neurone disease/Amyotrophic Lateral Sclerosis (MND/ALS) is an incurable disease which leads to muscle weakness that worsens over time. MND/ALS is highly heterogeneous in its presentation, with many people experiencing a rapidly progressive trajectory of symptoms. Many people with living with MND/ALS (plwMND/ALS) experience a combination of flaccidity and spasticity of the muscles involved in speech, swallowing, breathing and coughing. This makes it challenging to deal with the saliva and mucous (“secretions”) produced by the body. Failure to manage these problems effectively can lead to accumulation and aspiration of secretions, which may cause pneumonia and respiratory insufficiency. Knowing the best way to treat this problem is a challenge. Systematic reviews report substantive ongoing uncertainty regarding secretions management (SM). Little is known about the comparative effectiveness of secretion management interventions, their impact on quality of life and acceptability for plwMND/ALS and their unpaid/family.
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