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Table 3 Patient-reported characteristics

From: Behavioural and psychological patterns of patients with idiopathic pulmonary fibrosis: a prospective study

  Baseline Six weeks Three months One year One year and a half Two years Main effect of time
(Visit 1) (Visit 2) (Visit 3) (Visit 4) (Visit 5) (Visit 6)
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
  1. Significant p-values are indicated in bold
  2. N refers to the number of participants who filled in the questionnaire or for whom the variable was applicable
  3. #Variables of which the evolution over time is not assessed
  4. *For the ‘adherence to sunscreen use’ and the ‘EQ-5D’, we only report the main effect of time (p-value) in this table
  5. We refer the readers to Additional file 1: table S4 for the pairwise comparisons between timepoints
  6. Abbreviations: K-BILD (The King’s Brief Interstitial Lung Disease questionnaire), SGRQ (The St. George’s Respiratory Questionnaire), EQ-5D (EuroQoL 5D)