Eating-derived pleasure in amyotrophic lateral sclerosis as a predictor of non-oral feeding

Abstract

Our objective was to examine the pleasure derived from eating in patients with advanced ALS and how this affects advice to have a gastrostomy. Patients with advanced ALS completed a visual analogue scale indicating the pleasure they derived from eating. Data were also collected on the severity of swallow using the Hillel scale, the independent feeding status, and on whether gastrostomy was accepted or not. The findings from 38 consecutive patients indicate that pleasure derived from eating is a powerful indicator of a person's acceptance of gastrostomy. In conclusion, the study showed that a simple analogue scale is quick and practical in a clinical setting even in severely compromised people with ALS and that the eating pleasure score was a strong predictor of the final decision to accept gastrostomy placement (p = 12.2 = 10⁻⁴).

Key words::

• Dysphagia
• gastrostomy
• visual analogue scale
• motor neuron disease
• amyotrophic lateral sclerosis

Acknowledgements

We thank the Motor Neurone Disease Association of Great Britain and Northern Ireland, the ALS Association, the ALS Therapy Alliance, the Medical Research Council (UK) and the NIHR Specialist Biomedical Research Centre in Mental Health and Biomedical Research Unit in Dementia at the South London and Maudsley NHS Foundation Trust (SLaM) and the Institute of Psychiatry, King’s College London for support.

This research has received funding from the European Community’s Health Seventh Framework Programme.

Declaration of interest: The authors declare that they have no conflicts of interest. The authors alone are responsible for the content and writing of the paper.