Supporting people with Motor Neuron Disease (MND) to make decisions about gastrostomy feeding tube placement: a survey of UK healthcare professionals’ practice and beliefs

Abstract

Objective

Understand the practice and beliefs of healthcare professionals (HCPs) supporting the decision-making of people with MND (pwMND) about gastrostomy placement, including identifying differences between professions.

Methods

An online cross-sectional survey disseminated to HCPs who support the decision-making of pwMND about gastrostomy placement.

Results

A total of 139 participants completed the survey including representation from a range of healthcare professions. A third (36/101, 36%) initiated discussions about gastrostomy later in practice than they believed was ideal. In relation to the outcome of declining compared to accepting gastrostomy, participants were more likely to discuss aspiration (80% vs. 68%), choking (76% vs. 58%) and prognosis (36% vs. 22%). Participants believed gastrostomies should be placed after a mean 8.1% weight loss since symptom-onset. More participants favored gastrostomy placement before pwMND presented with respiratory symptoms (45%) compared to onset of dysphagia (11%). Half believed pwMND placed gastrostomies too late. Participants were more likely to ‘often’/‘always’ recommend pwMND to have a gastrostomy (23%) than continue without (7%) or decline (4%) gastrostomy, when believing these were the best option for pwMND. Nurses and dietitians discussed the broadest range of information, while doctors were more likely to discuss mortality risk and prognosis.

Conclusion

There is variation in HCPs practice and beliefs about initiating discussions, the sharing of information and recommendations, and timing, about gastrostomy placement. The information shared varies by profession and there is evidence of sub-optimal communication between HCPs. Further research is required to understand how these findings may impact on the decision-making of pwMND about gastrostomy.

Keywords:

• Motor neuron disease
• amyotrophic lateral sclerosis
• gastrostomy
• decision-making
• survey
• multidisciplinary team

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article and its supplementary materials.

Acknowledgements

The authors wish to thank the members of SW fellowship topic expert and patient panels, for their support in the development and write up of this study.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This work was supported by SW’s Clinical Doctoral Research Fellowship (NIHR301592) funded by the Health Education England (HEE)/National Institute for Health and Care Research (NIHR). The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care. CJM is supported by NIHR BRC Sheffield and a NIHR research Professorship award.