Table 3 Patient-reported characteristics

Health literacy^#

N

64

Inadequate n (%)

13 (20.3)

Knowledge

N

50

34

9

Median total score (IQR)

6 (0)

6 (0)

6 (1)

Mean (SD)

5.7 (1)

5.6 (0.9)

5.6 (0.7)

Range

1–6

2–6

4–6

Score lower than 6, n (%)

8 (16)

8 (23.5)

3 (33.3)

Estimated mean score (95% CI)

5.7 (5.4; 5.9)

5.6 (5.3; 5.9)

5.6 (5.3; 5.9)

p = 0.8021

Side effects to pirfenidone

N

54

51

38

22

11

Patients experiencing min 1 side effect, n (%)

38 (70.4)

40 (78.4)

24 (63.2)

15 (68.2)

9 (81.8)

Number of side effects/patients

Median (IQR)

1 (2)

1 (1)

1 (3)

1.5 (3)

3 (4)

Range

0–5

0–7

0–5

0–4

0–6

Predicted mean count (95%CI)

1.4 (1.1; 1.7)

2.5 (2; 3)

1.5 (1.1; 2)

1.5 (1.1; 2.2)

2.7 (1.8; 4)

p = 0.0002

Depression

N

50

49

34

9

Total score: median (IQR)

3 (6)

4 (7)

3 (6)

2 (4)

Total score: range

0–17

0–14

0–13

0–7

Moderate depression n (%)

8 (16)

8 (16.3)

3 (8.8)

0

Estimated mean total score (95%CI)

2.9 (2.1; 3.9)

2.8 (2; 3.8)

2.2 (1.5; 3.1)

2.3 (1.3; 3.9)

p = 0.3785

Anxiety

N

51

35

9

Total score: median (IQR)

4 (11)

2 (5)

3.5 (6)

Total score: range

0–18

0–15

0–9

Moderate anxiety n (%)

9 (17.6)

3 (8.6)

0

Estimated mean total score (95%CI)

3 (1.9;4.7)

1.9 (1.1;3)

0.8 (0.1;1.9)

p < 0.0001

Intentions to be adherent to treatment^#

N

60

51

35

10

‘I expect to […]’

Mean (SD)

6.8 (0.9)

6.8 (0.5)

6.7 (1)

7 (0)

Range

1–7

5–7

1–7

7

‘I want to […]’

Mean (SD)

6.9 (0.8)

6.9 (0.3)

6.8 (1)

7 (0)

Range

1–7

5–7

1–7

7

‘I intend to […]’

Mean (SD)

6.9 (0.8)

6.9 (0.3)

6.8 (0.9)

7 (0)

Range

1–7

5–7

1–7

7

Level of motivation^#

N

59

53

35

10

Pre-Contemplation n

0

0

0

0

Contemplation n

2

0

0

0

Sufficient motivation n

57

53

35

10

Pirfenidone medication adherence

N

56

49

37

24

11

Taking nonadherence n (%)

11 (19.6)

12 (24.5)

12 (32.4)

8 (33.3)

4 (36.4)

N

11

12

12

8

4

Drug holiday n (%)

2 (18.2)

3 (25)

0

1 (12.5)

0

N

56

47

36

24

11

Dosing nonadherence n (%)

0

0

0

1 (4.2)

0

N

56

8

36

24

11

Discontinuation n (%)

0

0

0

0

0

N

10

12

12

8

4

Omitted to take pirfenidone n (%)

 1 time

7 (70)

6 (50)

7 (58.3)

4 (50)

2 (50)

 2 times

1 (10)

4 (33.3)

2 (16.7)

2 (25)

1 (25)

 3 times

0

1 (8.3)

1 (8.3)

1 (12.5)

0

 4 times

1 (10)

0

2 (16.7)

0

1 (25)

 More than 4 times

1 (10)

1 (8.3)

0

1 (12.5)

0

Predicted % of taking adherence (95%CI)

90.4 (77;96.3)

86.7 (71;94.5)

75.9 (55.5;88.8)

67.9 (46.2;83.9)

67.9 (46.2;83.9)

p = 0.0268

Pantoprazole medication adherence^#

N

56

46

36

24

11

Pantoprazole intake yes n (%)

42 (75)

38 (82.6)

25 (69.4)

18 (75)

10 (90.9)

N

40

37

25

18

9

Taking nonadherence n (%)

3 (7.5)

1 (2.7)

1 (4)

0

1 (10.0)

Barriers to medication adherence^#

N

51

35

8

Total numbers of barriers

 Median (IQR)

1 (4)

4 (4)

4 (6)

 Mean (SD)

3 (4.2)

3.7 (3.4)

5.6 (5.9)

 Range

0–15

0–11

19-Jan

Persons having min 1 barrier n (%)

35 (68.6)

27 (77.1)

8 (100)

Sun protection*

N

52

48

35

23

10

Inadequate sunscreen use

22 (42.3)

20 (41.7)

6 (17.1)

4 (17.4)

3 (30.0)

N

52

46

34

23

9

Inadequate use of protective clothes

18 (34.6)

14 (30.4)

7 (20.6)

5 (21.7)

4 (44.4)

N

52

46

34

23

N = 9

Not staying in the shadows

14 (26.9)

11 (23.9)

7 (20.6)

5 (21.7)

2 (22.2)

Use of sunscreen*

p = 0.0245

Physical inactivity

N

49

21

Not sufficiently active n (%)

28 (57.1)

9 (42.9)

Predicted timepoint % (95% CI)

59.2 (44.1;72.7)

42.9 (23;65.4)

p = 0.2271

Alcohol use^#

N

49

22

At-risk drinking behaviour n (%)

15 (30.6)

7 (31.8)

Perceived health status EQ-5D-5L

Descriptive health index, N

62

50

35

22

10

 Median (IQR)

0.840 (0.210)

0.863(0.225)

0.857 (0.219)

0.753 (0.218)

0.824 (0.183)

 Mean (SD)

0.780 (0.189)

0.804 (0.193)

0.824 (0.161)

0.760 (0.174)

0.794 (0.205)

Global health score based on the VAS, N

62

51

35

22

10

 Median (IQR)

70 (23)

70 (20)

70 (20)

66 (21)

62.5 (26)

 Mean (SD)

67.8 (15.8)

68.4 (20.3)

68 (13)

63.6 (15.9)

66.8 (17.4)

 Range

20–99

10–100

40–90

30–92

40–90

Frequencies reported problems, N

 Mobility, n (%)

64

51

35

22

10

  No problems

  Slight-extreme problems

28 (43.8)

24 (47.1)

17 (48.6)

9 (40.9)

7 (70)

 Self-care, n (%)

36 (56.2)

27 (52.9)

18 (51.4)

13 (59.1)

3 (30)

  No problems

  Slight-extreme problems

47 (73.4)

36 (72)

29 (82.9)

16 (72.7)

8 (80)

 Activities, n (%)

17 (26.6)

14 (28)

6 (17.1)

6 (27.3)

2 (20)

  No problems

  Slight-extreme problems

29 (45.3)

29 (56.9)

17 (48.6)

9 (40.9)

6 (60)

 Pain/discomfort, n (%)

35 (54.7)

22 (43.1)

18 (51.4)

13 (59.1)

4 (40)

  No problems

  Slight-extreme problems

33 (51.6)

23 (45.1)

16 (45.7)

9 (40.9)

3 (30)

 Anxiety/depression, n (%)

31 (48.4)

28 (54.9)

19 (54.3)

13 (59.1)

7 (70)

  No problems

39 (60.9)

35 (68.6)

25 (71.4)

13 (59.1)

5 (50)

  Slight-extreme problems

25 (39.1)

16 (31.4)

10 (28.6)

9 (40.9)

5 (50)

Mobility*

p = 0.1957

Self-care*

p = 0.7186

Activities*

p = 0.4568

Pain/discomfort

p = 0.4575

Anxiety/depression*

p = 0.2751

Quality of life K-BILD 

N

66

50

35

23

10

Total score

 Mean (SD)

57.1 (12)

60.7 (10.4)

61.9 (13)

60 (12.3)

62.5 (11.4)

 Range

32–100

35.5–84.6

36.5–90.8

36.5–90.8

47.8–84.6

Breathlessness/activities

 Mean (SD)

48.4 (19.8)

50.5 (20.2)

50.9 (17.9)

49.3 (17.6)

55.7 (13.5)

 Range

0–100

0–100

0–79.9

0–79.9

39.9–79.9

Psychological

 Mean (SD)

55.1 (14.7)

60.2 (15)

63.7 (18.4)

59 (17.6)

61.6 (18.2)

Range

28–100

32.3–100

33.9–100

25.3–100

41.2–100

Chest symptoms

 Mean (SD)

73.8 (20.4)

77.6 (18)

75.2 (20)

72.9 (16.3)

79.8 (18.1)

 Range

17.3–100

17.3–100

32.1 (100)

32.1–100

44–100

Estimated mean (95% CI)

 Total score

57.5 (54.6;60.4)

60.6 (57.7;63.4)

59.3 (55.7;62.9)

56.8 (53.1;60.5)

57.4 (52.9;62)

p = 0.0397

 Breathlessness/activities

48.4 (43.6;53.2)

49.7 (44.4;55)

46.3 (40.5;52)

43.5 (37.2;49.8)

48 (42;54)

p = 0.2339

 Psychological

55.1 (51.6;58.7)

60 (55.8;64.2)

61.4 (56.3;66.9)

56.1 (51.2;61)

56.7 (49;64.5)

p = 0.0151

 Chest symptoms

73.8 (68.9;78.7)

78.1 (73.4;82.9)

73.2 (67.3;79.1)

72.1 (66;78.1)

72.9 (64.2;81.5)

p = 0.1798

Quality of life SGRQ

N

39

34

28

20

6

Total score

 Mean (SD)

39 (20.6)

33.3 (21.1)

35.3 (17.2)

35.3 (18.4)

26.5 (13.6)

 Range

0.4–92.4

4.3–76.3

9.6–67.4

6.7–85.5

10.5–47

Symptoms

 Mean (SD)

42.6 (25.2)

30.8 (24)

29.7 (21.7)

35.8 (23.6)

22.8 (9.8)

 Range

0–97.7

0–88

0–73

2.7–92.8

12.9–40

Activities

 Mean (SD)

54.4 (26)

49.9 (26.7)

53.3 (23)

50.5 (23.1)

45 (20.4)

 Range

0–100

0–100

0–92.5

0–100

18.1–67.2

Impact

 Mean (SD)

29.2 (19.3)

24.4 (19.7)

25.6 (17.3)

26.5 (16.9)

16.7 (12.1)

 Range

0–85.3

0–70.5

0–59.7

1.8–82

5.5–37.6

Estimated mean (95% CI)

 Total score

36.2 (30.4; 42. 1)

33.4 (27.6;39.2)

37.8 (31.6; 44)

36.7 (30.2;43. 2)

35.1 (28.8; 41. 4)

p = 0.4953

 Symptoms

37.6 (31.2; 40)

31 (24.4;37.3)

29.4 (22.6; 36. 1)

35.9 (27.9; 43.9)

35.3 (29; 41.6)

p = 0.0532

 Activities

52.4 (45.8; 59.1)

52 (44.7;59.3)

55.2 (47.9; 62.6)

53.8 (46.5; 61.1)

51.9 (43.5; 60.2)

p = 0.8818

 Impact

25.2 (20.3; 30.2)

23.3 (18.3;28.3)

28.8 (22.3; 35.3)

27 (21; 33)

33.8 (22.3; 45.3)

p = 0.1039