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

Figures & data

Table 1. Participant characteristics.

Characteristic	n (%)
Gender (N = 139)
Female	123 (89)
Male	14 (10)
Prefer not to say	2 (1)
Healthcare profession (N = 139)
Dietitian	73 (53)
Nurse	23 (17)
Speech and language therapist	19 (14)
Doctor	17 (12)
Physiotherapist	4 (3)
Occupational therapist	3 (2)
Number of pwMND on caseload (N = 138)
0–10	61 (44)
11–20	30 (22)
21–30	16 (12)
31–100	18 (13)
>100	13 (9)
Percentage of clinical caseload that includes pwMND (N = 138)
0–19%	86 (62)
20–39%	22 (16)
40–99%	16 (12)
100%	14 (10)
Number of years experience caring for pwMND (N = 83)	Mean 11.1 years (SD 8.3; Range 1–39)
Setting in which discussions about gastrostomy placement occur (N = 139)
Domiciliary visit	92 (66)
Telephone calls	69 (50)
Hospital based out-patient clinic	60 (43)
Hospital ward	59 (42)
Video call	39 (28)
Community based out-patient clinic	36 (26)
Hospice based out-patient clinic	20 (14)
Hospice in-patient	3 (2)
Other	2 (1)

Table 2. The outcomes discussed with pwMND when discussing accepting or declining gastrostomy placement.

Outcome of gastrostomy placement discussed	Discussed in relation to accepting gastrostomy (n (%)) N = 139	Discussed in relation to declining gastrostomy (n (%)) N = 139	p-value
Impact on the person’s weight	111 (80%)	109 (78%)	0.706
Risk of aspiration	95 (68%)	111 (80%)	0.018
Risk of choking	80 (58%)	106 (76%)	0.0002
Impact on quality of life	115 (83%)	104 (75%)	0.041
Time taken to finish meals	98 (71%)	87 (63%)	0.071
Estimated length of life remaining (prognosis)	30 (22%)	50 (36%)	0.0002
Impact on caregivers (e.g. family)	87 (63%)	70 (50%)	0.007

Note: Significant differences between the proportion of participants who would discuss outcome in relation to accepting and declining gastrostomy indicated in bold (McNemar’s paired test of symmetry p ⩽ 0.05).

Figure 1. The frequency with which participants would give pwMND recommendations to (1) Have a gastrostomy; (2) Continue without a gastrostomy; (3) Not ever have a gastrostomy placed, when the participant believed that these options were the best course of action for a person with MND to take.

Table 3. Participants responses to questions about when they believe pwMND should have a gastrostomy placed in relation to their respiratory and swallowing function.

	When participants believed gastrostomy tubes should be placed in relation to respiratory function (n (%))
When participants believed gastrostomy tubes should be placed in relation to swallowing function (n(%))	Prior to any respiratory symptoms	Compensating for early respiratory symptoms, that is, pre-NIV	Experiencing significant consequences, that is, on NIV	Never refer to respiratory failure	Total
Prior to any swallowing problems	13 (10)	1 (1)	0 (0)	1 (1)	15 (11)
Compensating for impact of dysphagia, for example, through texture modified diet	48 (35)	40 (29)	3 (2)	20 (15)	111 (81)
Experiencing significant consequences, for example, chest infections, choking episodes	1 (1)	4 (3)	0 (0)	4 (3)	9 (7)
Never refer to dysphagia	0 (0)	0 (0)	0 (0)	2 (2)	2 (2)
Total	62 (45)	45 (33)	3 (2)	27 (20)	137

Data availability statement

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