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Table 3 Participation in ALS Talk by topic

From: Asynchronous online focus groups for research with people living with amyotrophic lateral sclerosis and family caregivers: usefulness, acceptability and lessons learned

 

Recruited

Completed introduction on platform

1.Communication around the time of ALS diagnosis

2.Talking about ALS changes

3.Looking for information outside health care system

4.Research, & complementary or alternative therapies

5.Planning for future medical care

6.Death and dying

7. Improving ALS communication

Optional topic: COVID-19

Optional topic: Observational Research & Data sharing

Alberta

39

32

29

23

28

24

16

12

11

13

9

 PwALS

20

15

14

12

14

12

10

8

7*

9*

6*

 Caregiver

19

17

15

11

14

12

6*

4*

4*

4*

3*

British Columbia

33

26

24

20

21

19

19

17

15

16

14

 PwALS

14

10

9

9

9

9

9

8

7

9

6

 Caregiver

19

16

15

11

12

10

10

9

8*

7*

8*

Ontario

44

33

27

25

26

22

20

17

15

14

9

 PwALS

22

17

14

13

14

12

12

10

9

9

6*

 Caregiver

22

16

13

12

12

10

8*

7*

6*

5*

3*

QC/NB/NS

21

9

8

7

6

4

3

3

2

0

n/a

 PwALS

14

9

8

7

6

4*

3*

3*

2*

0*

n/a

 Caregiver

7

n/a

n/a

n/a

n/a

n/a

n/a

n/a

n/a

n/a

n/a

Total

137

100

88

75

81

69

58

49

43

43

32

  1. * ≤ 50% participation in AOFG based on number of people who completed introductions on the platform
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BMC Medical Research Methodology

ISSN: 1471-2288

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