Table 4.
Demographic and clinical characteristics of the concept-elicitation sample (N tot = 61)
| Adult CV (N = 27) | Adult CP (N = 25) | Adolescent CF (N = 9) | Total (N = 61) | |
|---|---|---|---|---|
| Patient-reported | ||||
| Sex | ||||
| Male | 11 (41) | 16 (64) | 5 (56) | 32 (52) |
| Female | 16 (59) | 9 (36) | 4 (44) | 29 (48) |
| Age | ||||
| Mean | 30 | 52 | 14 | 36 |
| Minimum, maximum | 19, 64 | 20, 81 | 12, 16 | 12, 81 |
| Missing data | 0 | 1 (4) | 0 | 1 (2) |
| Ethnicity | N = 21a | N = 17a | N = 47 | |
| White/Caucasian | 18 (86) | 16 (94) | 9 (100) | 43 (91) |
| African, Caribbean, or Black | 0 | 0 | 0 | 0 |
| Asian | 2 (10) | 1 (6) | 0 | 3 (6) |
| Mixed race | 1 (5) | 0 | 0 | 1 (2) |
| Adults only—education | N = 52 | |||
| Some high school, but no diploma or GED | 3 (11) | 5 (20) | NA | 8 (15) |
| High school diploma or equivalent | 4 (15) | 5 (20) | 9 (17) | |
| Some college or associate’s degree/bachelor’s degree | 10 (37) | 6 (24) | 16 (31) | |
| Some graduate work | 4 (15) | 2 (8) | 6 (12) | |
| Post-graduate degree | 3 (11) | 5 (20) | 8 (15) | |
| GCSE | 1 (4) | 0 | 1 (2) | |
| GCE A level | 1 (4) | 0 | 1 (2) | |
| CIMA (accountant) | 0 | 1 (4) | 1 (2) | |
| PhD | 1 (4) | 0 | 1 (2) | |
| National Craftsman Certificate | 0 | 1 (4) | 1 (2) | |
| Physician-reported | ||||
| How PEI was diagnosed | ||||
| Weight loss | 0 | 10 (40) | 2 (22) | 12 (20) |
| Steatorrhea | 19 (70) | 17 (68) | 5 (56) | 41 (67) |
| Diarrhea | 4 (15) | 15 (60) | 4 (44) | 23 (38) |
| Bloating | 5 (19) | 12 (48) | 2 (22) | 19 (31) |
| Abdominal discomfort | 7 (26) | 16 (64) | 4 (44) | 27 (44) |
| Fecal elastase test | 7 (26) | 12 (48) | 9 (100) | 28 (46) |
| Recurrent rectal prolapse | 1 (4) | 0 | 0 | 1 (2) |
| Meconium level | 1 (4) | 0 | 0 | 1 (2) |
| Neonatal screening | 2 (7) | 0 | 0 | 2 (3) |
| Failure to thrive | 1 (4) | 0 | 0 | 1 (2) |
| Missing data | 2 (7) | 0 | 0 | 2 (3) |
| Years since diagnosis | ||||
| Mean | 26 | 5 | 11 | 16 |
| Minimum, maximum | 13, 48 | 0, 23 | 3, 16 | 0, 48 |
| Missing data | 2 (7) | 3 (12) | 0 | 5 (8) |
| Years receiving PEI medication | ||||
| Mean | 25 | 4 | 13 | 15 |
| Minimum, maximum | 3, 47 | 0, 9 | 11, 16 | 0, 47 |
| Missing data | 1 (4) | 0 | 0 | 1 |
Data are presented as n (%) unless otherwise indicated
CF cystic fibrosis, CIMA Chartered Institute of Management Accountants, CP chronic pancreatitis, GED General Educational Development, GCE General Certificate of Education, GCSE General Certificate of Secondary Education, NA not applicable, N tot number in total sample, PEI pancreatic exocrine insufficiency
aData protection rules precluded patient ethnicity being collected in France