Outcomes of Enteral Feeding in Motor Neurone Disease

Abstract

Motor Neurone Disease (MND) is a fatal neurodegenerative disease of unknown aetiology characterised by the degeneration of motor neurones leading to progressive wasting and weakness of the bulbar, limb and respiratory muscles. Symptomatic treatment remains the cornerstone of management. Malnutrition is a common occurrence and an independent risk factor for worse prognosis. Clinical guidelines recommend enteral feeding when there is deterioration in nutritional status and/or dysphagia. However, it remains unclear whether enteral feeding offers any survival advantage. Moreover, the impact of enteral feeding on patients’ quality of life remains unknown. This study was undertaken to assess the impact of enteral feeding on survival and quality of life of patients with MND and describe the clinico-demographic characteristics of MND in Lancashire and South Cumbria in North West England.

The study has both retrospective and prospective arms. The retrospective study was undertaken by reviewing the Preston MND database and case notes to examine the demographic, clinical and survival characteristics of MND in Lancashire and South Cumbria. The prospective study was undertaken over a period of three years to explore the perspectives of 21 patients with enteral feeding and its impact on their quality of life.The overall crude incidence of MND was 3.15 per 100,000. The mean age of onset was 67.28 (S.D. 11.06; range 22.78-93.06) years. Median overall illness duration was 1.98 (range 1.18-3.05) years. The presentation was limb onset in 62.1% cases and bulbar onset in 37.9% cases. A total of 91 (26.8%) patients received enteral feeding of which 67.0% were bulbar onset. Enteral feeding was not associated with a statistically significant survival advantage (χ2 (1) = 1.73, p = 0.19).

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Enteral feeding was associated with improved quality of life, despite the attendant inconveniences. Enteral feeding was perceived as being essential to survival by some participants while others reported a sense of relief and security that their nutritional needs were met. The body mass index stabilised following enteral feeding. A key finding, relevant for clinical practice, is that most study subjects acknowledged the importance of enteral feeding and a vast majority did not wish for the feeding tube to be removed, indicating a positive attitude towards enteral feeding.

In conclusion, this study demonstrates a positive impact of enteral feeding on quality of life but not on survival. The lack of survival advantage should however, not dissuade clinicians from offering enteral feeding to patients with MND who manifest dysphagia and/or malnutrition. Even if enteral feeding does not add months to life, this study provides preliminary evidence that that it helps to add life to months.