Patient characteristics at baseline for T0 model
| Training (n=3047) | Validation (n=1525) | Overall sample (n=4572) | |
| FEV1 (% predicted) | 34.2 (7.6) | 34.3 (7.3) | 34.2 (7.6) |
| Gender (female) | 1420 (46.6%) | 758 (49.7%) | 2178 (47.6%) |
| Age at incident advance CF | 30.5±10.7 (median=28.0) | 30.4±11.1 (median=27.0) | 30.5±10.8 (median=27.0) |
| Race (white) | 2885 (94.7%) | 1456 (95.5%) | 4341 (94.9%) |
| Insurance | |||
| Private insurance only | 1340 (44.0%) | 690 (45.2%) | 2030 (44.4%) |
| Medicare only | 125 (4.1%) | 76 (5.0%) | 201 (4.4%) |
| Combination of any insurance including Medicaid | 1582 (51.9%) | 759 (49.8%) | 2341 (51.2%) |
| BMI | 21.0±3.5 (median=20.4) | 21.0±3.5 (median=20.3) | 21.0±3.5 (median=20.3) |
| Hispanic ethnicity | 148 (4.9%) | 79 (5.2%) | 227 (5.0%) |
| Ventilation machine (non-invasive) | |||
| No | 2770 (93.8%) | 1391 (93.9%) | 4161 (93.9%) |
| Yes | 114 (3.9%) | 57 (3.8%) | 171 (3.9%) |
| Unknown | 68 (2.3%) | 33 (2.2%) | 101 (2.3%) |
| Corticosteroids (oral (eg, prednisone)) | 392 (12.9%) | 200 (13.1%) | 592 (12.9%) |
| Patient is on enzymes | 2719 (89.2%) | 1362 (89.3%) | 4081 (89.3%) |
| Oxygen therapy | |||
| No | 1964 (66.5%) | 970 (65.5%) | 2934 (66.2%) |
| Yes, continuously | 130 (4.4%) | 61 (4.1%) | 191 (4.3%) |
| Yes, nocturnal and/or with exertion | 265 (9.0%) | 138 (9.3%) | 403 (9.1%) |
| Yes, during exacerbation | 451 (15.2%) | 239 (16.1%) | 690 (15.6%) |
| Yes, prn | 95 (3.2%) | 50 (3.4%) | 145 (3.3%) |
| Unknown | 47 (1.6%) | 23 (1.6%) | 70 (1.6%) |
| Supplemental feeding | 1601 (52.5%) | 825 (54.1%) | 2426 (53.1%) |
| Haemophilus influenzae (any species) | 197 (6.5%) | 85 (5.6%) | 282 (6.2%) |
| Pseudomonas aeruginosa (found in the culture) | 2305 (75.7%) | 1173 (76.9%) | 3478 (76.1%) |
| Burkho complex (Burkholderia species) | |||
| No | 2795 (94.7%) | 1407 (95.0%) | 4202 (94.8%) |
| Yes | 157 (5.3%) | 74 (5.0%) | 231 (5.2%) |
| Other microorganisms | 650 (21.3%) | 325 (21.3%) | 975 (21.3%) |
| Staphylococcus aureus/resistant to MRSA:* | |||
| +/+ | 861 (28.3%) | 426 (27.9%) | 1287 (28.1%) |
| +/− | 793 (26.0%) | 391 (25.6%) | 1184 (25.9%) |
| −/NA | 1304 (42.8%) | 667 (43.7%) | 1971 (43.1%) |
| P. aeruginosa/Resistant to aminoglycosides:† | |||
| +/+ | 819 (26.9%) | 413 (27.1%) | 1232 (26.9%) |
| +/− | 1486 (48.8%) | 760 (49.8%) | 2246 (49.1%) |
| −/NA | 653 (21.4%) | 311 (20.39%) | 964 (21.1%) |
| Pulmonary complications (massive haemoptysis or pneumothorax requiring chest tube) | 126 (4.1%) | 68 (4.5%) | 194 (4.2%) |
| Liver disease, cirrhosis | |||
| No | 2851 (96.6%) | 1434 (96.8%) | 4285 (96.7%) |
| Yes | 101 (3.4%) | 47 (3.2%) | 148 (3.3%) |
| Cancer confirmed by histology | 16 (0.5%) | 6 (0.4%) | 22 (0.5%) |
| Depression | |||
| No | 2178 (73.8%) | 1118 (75.5%) | 3296 (74.4%) |
| Yes | 774 (26.2%) | 363 (24.5%) | 1137 (25.6%) |
| Renal failure requiring dialysis | |||
| No | 2939 (99.6%) | 1474 (99.5%) | 4413 (99.5%) |
| Yes | 13 (0.4%) | 7 (0.5%) | 20 (0.5%) |
| # of clinic visits in the review year | 4.4±3.0 (median=4.0) | 4.5±2.9 (median=4.0) | 4.5±2.9 (median=4.0) |
| Disabled | 668 (21.9%) | 357 (23.4%) | 1025 (22.4%) |
| DM or impaired glucose tolerance | 1351 (44.3%) | 681 (44.7%) | 2032 (44.4%) |
| Smoking | |||
| No | 2865 (97.1%) | 1435 (96.9%) | 4300 (97.0%) |
| Occasionally | 41 (1.4%) | 20 (1.4%) | 61 (1.4%) |
| Regularly, <1 ppd | 27 (0.9%) | 23 (1.6%) | 23 (0.5%) |
| Regularly, 1 ppd or more | 14 (0.5%) | 1 (0.07%) | 1 (0.02%) |
| Unknown | 5 (0.2%) | 2 (0.1%) | 2 (0.05%) |
| Mutation class | |||
| 1–3 | 2207 (72.4%) | 1095 (71.8%) | 3302 (72.2%) |
| 4–5 | 218 (7.2%) | 114 (7.5%) | 332 (7.3%) |
| Other | 429 (14.1%) | 222 (14.6%) | 651 (14.2%) |
| Unknown missing | 193 (6.3%) | 94 (6.2%) | 287 (6.3%) |
| # of pulmonary exacerbations in the year preceding advanced stage cf diagnosis | 2.0±2.0 (median=2.0) | 2.0±2.0 (median=2.0) | 2.0±2.0 (median=2.0) |
| Baseline lung transplant evaluation status: | |||
| Not pertinent | 2808 (92.2%) | 1407 (92.3%) | 4215 (92.2%) |
| Accepted, on waiting list | 43 (1.4%) | 17 (1.1%) | 60 (1.3%) |
| Evaluated, final decision pending | 80 (2.6%) | 42 (2.8%) | 122 (2.7%) |
| Evaluated, rejected | 11 (0.3%) | 12 (0.8%) | 23 (0.5%) |
| Unknown | 10 (0.3%) | 3 (0.2%) | 13 (0.3%) |
*Refers to presence of MRSA on culture/resistant to vancomycin.
†Refers to presence of Pseudomonas on culture/resistant to all aminoglycoside.
BMI, body mass index; CF, cystic fibrosis; DM, diabetes mellitus; FEV1, forced expiratory volume in 1 s; MRSA, methicillin-resistant S. aureus; NA, not available.