Development of ‘gastrostomy tube – is it for me?’, a web-based patient decision aid for people living with motor neurone disease considering having a gastrostomy tube placed

Figures & data

Figure 1 Process for the development and evaluation of the Patient Decision Aid.

Table 1 Characteristics of people living with MND participants.

	Phase 1 (n = 10)	Phase 2 (n = 6)	Phase 3 (n = 17)
Sex (% male)	70% Male	83% Male	59% Male
Age (years)	70 (56–90)	62 (50–67)	66 (52–76)
Ethnicity	90% White British 10% Indian	100% White British	94% White British 6% White Irish
Level of education	30% degree or equivalent 20% GCSE/O level 50% unknown	33% GCSE/O Level 67% Unknown	47% degree or equivalent 12% A Level 29% GCSE/O level 12% No qualifications
Employment status	80% Retired 10% Self-employed 10% Disabled, unable to work	66% Retired 17% Self-employed 17% Employed	–
Subtype of MND	80% ALS 10% PLS 10% PBP	100% ALS	–
Site of onset	80% Limb 10% Bulbar 10% respiratory	67% Limb 33% Bulbar	–
Stage of disease	80% Symptoms progressing 20% Advanced	83% Symptoms progressing 17% Advanced	–
Gastrostomy tube already placed at the time of the interview	40%	33%	29%

Figure 2 Screenshots of ‘Gastrostomy tube – is it for me?’.

Table 2 Content outline of Gastrostomy tube – is it for me?

Section of PDA	Content
Welcome	Who is the decision aid for? What are my options now? How might the decision aid help me? Using the decision aid
Introduction to gastrostomy tube	Information on what a gastrostomy tube is Why people with MND are offered a gastrostomy tube
Key information	Answers to frequently asked questions to help decide whether to have a gastrostomy tube. Questions include: Will I be able to eat and drink with a gastrostomy tube? How does the tube stay in place?
The details	Contains detailed information on: The gastrostomy tube The procedure to fit a gastrostomy tube Using and caring for the tube Living with a gastrostomy tube What are the alternatives to a gastrostomy tube When should the decision be made
Compare your options	A summary of what each option involves, the benefits of each option, and the possible harms of each option.
Fact Checker	A series of eight questions to check the knowledge of the facts. The answers are displayed below each response after a response has been selected.
Your decision	An exercise to help make a decision about a gastrostomy tube by moving a counter toward a statement that feels most relevant.
Useful resources	Links to relevant resources that provide reliable information.