Table 1 Sample characteristics of interviewed CF patients (n = 74, SD in brackets)

Average age (years)

 All patients

18.3 (15.1)

 Adult patients

31.1 (10.1)

Sex

 Male

52.7 %

 Female

47.3 %

Is there a caregiver?

 Yes

44.6 %

 No

57.4 %

Average age of (principal) caregiver (years)

37.3 (11.6)

Average informal care hours per week (whole sample)

33.4 (52.9)

Average informal care hours per week (if there is a caregiver)

74.8 (56.5)

Health Related Quality of Life (Visual Analog Scale)

62.23 (20.09)

 Adult CF patients (n = 37)^a

 Visual Analog Scale score for general population^b

86.84 (14.41)

 Main Caregivers for CF patients (n = 33)^c

80.85 (14.68)

 Visual Analog Scale score for general population^d

86.56 (13.79)

Health Related Quality of Life (EQ-5D index score)

 Adult CF patients (n = 37)^a

0.640 (0.264)

 EQ-5D index score for general population^b

0.93 (0.15)

 Main Caregivers for CF patients (n = 33)^c

0.836 (0.155)

 EQ-5D index score for general population^d

0.91 (0.16)