Characteristic | Stage 1 Identifying priorities questionnaire (n=196) | Stage 3 Prioritisation questionnaire (n=261) |
Category of respondent | ||
Person with PF | 152 (78) | 134 (51) |
Caregiver of person with PF | 32 (16) | 38 (15) |
Healthcare professionals/researchers | 12 (6) | 89 (34) |
Gender | ||
Male | 91 (46) | 124 (48) |
Female | 98 (50) | 110 (42) |
Not reported | 7 (4) | 27 (10) |
Current age, years (people with PF and caregivers) | (n=184) | (n=172) |
≤54 | 9 (5) | 10 (6) |
55–64 | 19 (10) | 12 (7) |
65–74 | 82 (45) | 74 (43) |
75–84 | 61 (33) | 55 (32) |
≥85 | 10 (5) | 12 (7) |
Not reported | 3 (2) | 9 (5) |
Residence (people with PF and caregivers) | (n=184) | (n=172) |
ACT | 3 (2) | 3 (2) |
NSW | 60 (33) | 71 (41) |
NT | 3 (2) | 2 (1) |
QLD | 17 (9) | 13 (8) |
SA | 19 (10) | 14 (8) |
TAS | 11 (6) | 7 (4) |
VIC | 56 (30) | 45 (26) |
WA | 12 (7) | 8 (4) |
Not reported | 0 (0) | 9 (5) |
Years since diagnosed (people with PF) | (n=152) | (n=134) |
0–1 | 12 (8) | 16 (12) |
2–4 | 71 (47) | 115 (86) |
≥5 | 65 (43) | 59 (44) |
Don’t know | 1 (1) | 3 (2) |
Relation of caregiver to person with PF (caregivers) | (n=32) | (n=38) |
Husband | 12 (37) | 11 (29) |
Wife | 14 (44) | 15 (40) |
Partner | 0 (0) | 1 (2) |
Child | 5 (16) | 5 (13) |
Other | 1 (3) | 0 (0) |
Not reported | 0 (0) | 6 (16) |
Health professionalspeciality(>1option allowed) | (n=12) | (n=89) |
Allied health professional | 3 (25) | 15 (17) |
Nurse | 1 (8) | 6 (7) |
Researcher | 1 (8) | 10 (11) |
Respiratory physician | 0 (0) | 38 (43) |
Specialist ILD physician | 7 (58) | 12 (13) |
Physicianandresearcher | 0 (0) | 2 (2) |
Other | 0 (0) | 12 (13)* |
Years of experience working in PF (HCPs) | (n=89) | |
0–5 | NA | 35 (39) |
6–10 | NA | 15 (17) |
11–15 | NA | 15 (17) |
16–20 | NA | 9 (10) |
21+ | NA | 15 (17) |
Results are expressed in terms of numbers (% of n)
NA= not asked
*Others include: exercise physiologist (n=1), respiratory attendant/trainee (n=5), registrar (n=3), physician trainee (n=2), clinical psychologist (n=1)
ACT, Australian Capital Territory; HCPs, healthcare professionals; ILD, interstitial lung disease; NA, not asked; NSW, New South Wales; NT, Northern Territory; PF, pulmonary fibrosis; QLD, Queensland; SA, South Australia; TAS, Tasmania; VIC, Victoria; WA, Western Australia.