Table 1 Focus group discussion topics

Intro

Register, ‘welcome to the focus group’, demographic survey introductions

1

1–2

Communication around the time of ALS Diagnosis

2

3–4

Talking about ALS changes

3

5–6

Seeking information outside the health care system

4

7–8

Research participation; complementary and alternative therapies

5

9–10

Planning for future medical care

6

11–12

Conversations about death & dying

7

13–14

Improving ALS communication and support

Optional

15–16

Participation in observational research and data sharing