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Table 4 Impact frequencies and difficulty ratings

From: Development of the Fabry Disease Patient-Reported Outcome (FD-PRO): a new instrument to measure the symptoms and impacts of Fabry Disease

Impact concepts

Impact frequency, n (%)

Impact difficulty rating, mean (n)

Treated group (n = 20)

Treatment-naïve group (n = 17)

All (N = 37)

All (N = 37)

Physical activity limitations and restrictions

 General physical limitations

9 (45.0)

4 (23.5)

13 (35.1)

7.0 (6)

 Exercise limitations

16 (80.0)

9 (52.9)

25 (68.6)

5.0 (21)

 Difficulty with stairs

9 (45.0)

3 (17.6)

12 (32.4)

6.2 (6)

 Walking limitations

7 (35.0)

7 (41.2)

14 (37.8)

6.9 (8)

Difficulty doing daily activities

 General daily activity limitations

11 (55.0)

8 (47.1)

19 (51.4)

6.0 (4)

 Difficulty with driving

3 (15.0)

0

0

 Difficulty with household responsibilities

15 (75.0)

6 (35.3)

21 (56.8)

6.2 (18)

 Difficulty with personal care

7 (35.0)

1 (5.9)

8 (21.6)

7.0 (4)

 Work/school limitations

17 (85.0)

11 (64.7)

28 (75.7)

6.3 (24)

Social/lifestyle limitations and restrictions

 Clothing choices

8 (40.0)

3 (17.6)

11 (29.7)

5.0 (3)

 Diet restrictions

7 (35.0)

5 (29.4)

12 (32.4)

6.8 (4)

 Leisure

9 (45.0)

5 (29.4)

14 (37.8)

7.3 (8)

 Relationships

   

6.9 (16)

 Family relationships

11 (55.0)

5 (29.4)

0

 Friend relationships

3 (15.0)

4 (23.5)

0

 General relationship

3 (15.0)

1 (5.9)

0

 Spouse relationship

5 (25.0)

4 (23.5)

0

 Outdoor activity

7 (35.0)

2 (11.8)

9 (24.3)

9.5 (2)

 Reproductive choices

4 (20.0)

0

4 (10.8)

9.0 (2)

 Sexual activity

3 (15.0)

4 (23.5)

7 (18.9)

7.9 (7)

 Social activity

15 (75.0)

7 (41.2)

22 (59.5)

6.5 (15)

Emotional health

 Anger

0

2 (11.8)

2 (5.4)

6.0 (1)

 Depression

10 (50.0)

10 (58.8)

20 (54.1)

7.1 (14)

 Embarrassment

5 (25.0)

3 (17.6)

8 (21.6)

4.4 (5)

 Frustration

8 (40.0)

4 (23.5)

12 (32.4)

7.8 (4)

 Guilt

4 (20.0)

2 (11.8)

6 (16.2)

9.0 (2)

 Perceptions of health

8 (40.0)

6 (35.3)

14 (37.4)

7.7 (10)

 Irritability

7 (35.0)

1 (5.9)

8 (21.6)

10.0 (1)

 Negative outlook

3 (15.0)

1 (5.9)

4 (10.8)

3.3 (3)

 Positive outlook

5 (25.0)

0

0

 Self-image

11 (55.0)

2 (11.8)

13 (35.1)

2.0 (1)

 Stress

10 (50.0)

4 (23.5)

14 (37.8)

10.0 (2)

 Worry/fear

10 (50.0)

9 (52.9)

19 (51.4)

6.6 (7)

Sleep difficulties

 Difficulty falling asleep

7 (35.0)

3 (17.6)

10 (27.0)

7.0 (2)

 Difficulty staying asleep

6 (30.0)

5 (29.4)

11 (29.7)

7.5 (2)

 Sleep quality

5 (25.0)

8 (47.1)

13 (35.1)

6.6 (10)

Cognitive function

 Memory problems

13 (65.0)

10 (58.8)

23 (62.2)

6.2 (12)

 Poor focus/concentration

10 (50.0)

8 (47.1)

18 (48.6)

7.7 (15)

 Other cognitive limitations

6 (30.0)

0

0

Other impacts

 Other

3 (15.0)

0

3 (8.1)

7.0 (5)

  1. Italics indicate higher impact frequency and difficulty. Bold indicate highest impact frequency and difficulty
  2. Difficulty ratings range from 0 = not difficult at all, to 10 = extremely difficult