. Author manuscript; available in PMC: 2023 Sep 1.

Published in final edited form as: J Cyst Fibros. 2021 Dec 28;21(5):769–776. doi: 10.1016/j.jcf.2021.12.014

Table 1 –

Characteristics of pancreatic-sufficient (PS-CF) study cohort

	Full dataset	Age 6 years	Age 12 years	Age 16 years
Number of patients	424	381	137	60
Number of visits	4,284	381	137	60
Years of follow-up¹	9 [7–13]	---	---	---
Female sex	211 (49.8%)	188 (49.3%)	69 (50.4%)	34 (56.7%)
Mean age, years	6.7 (4.5)	6.5 (0.3)	12.5 (0.3)	16.5 (0.3)
Race/ethnicity²:
- White	373 (87.9%)	342 (89.8%)	122 (89.1%)	50 (83.3%)
- Black	22 (5.2%)	18 (4.7%)	<5^*	<5^*
- Other	29 (6.8%)	21 (5.5%)	11 (8.0%)	7 (11.7%)
- Hispanic	66 (15.6%)	53 (13.9%)	18 (13.1%)	8 (13.3%)
Birth cohort:
- 1995–2002	144 (34.0%)	117 (30.7%)	114 (83.2%)	60 (100%)
- 2003–2010	280 (66.0%)	264 (69.3%)	23 (16.8%)	N/A
Diagnosis:
- NBS	240 (56.6%)	227 (59.6%)	53 (38.7%)	17 (28.3%)
- Other	184 (43.4%)	154 (40.4%)	84 (61.3%)	43 (71.7%)
Age at diagnosis:
- <3 months	300 (71.8%)	280 (74.5%)	80 (59.3%)	28 (46.7%)
- 3mo-1yr	69 (16.5%)	55 (14.6%)	37 (27.4%)	24 (40.0%)
- 1–2yrs	49 (11.7%)	41 (10.9%)	18 (13.3%)	8 (13.3%)
≥1 F508del mutation	277 (65.3%)	255 (66.9%)	88 (64.2%)	36 (60.0%)
Mutation class:
- Both I–III	22 (7.8%)	18 (7.1%)	<5^*	<5^*
- At least one IV–VI	237 (84.8%)	219 (86.6%)	86 (88.7%)	41 (85.4%)
- Missing both	24 (8.5%)	16 (6.3%)	<5^*	<5^*
Insurance status³:
- Private	315 (74.3%)	196 (51.4%)	75 (54.7%)	34 (56.7%)
- Medicaid	234 (55.2%)	119 (31.2%)	56 (40.9%)	20 (33.3%)
- Medicare / other	126 (28.7%)	50 (13.1%)	5 (3.7%)	5 (8.4%)
- Missing / no inurance	185 (43.6%)	15 (3.9%)	<5^*	<5^*
Maternal education level⁴:
- Highschool or less	177 (41.8%)	73 (19.4%)	29 (21.2)	12 (20.0%)
- Any college or grad school	327 (77.1%)	154 (41.0%)	60 (43.8)	29 (48.4%)
- Unknown/missing	376 (88.7%)	149 (39.6%)	48 (35.0%)	19 (31.7%)
Age at first Pseudomonas¹	4.5 [2.3–7.6]	---	---	---
Fecal elastase (μg/g)⁵	412 (113)	---	---	---
- Elastase >200 μg/g	160 (37.7%)	150 (39.4%)	32 (23.4%)	13 (21.7%)
- Not available	258 (60.9%)	226 (59.3%)	104 (75.9%)	47 (78.3%)
FEV1 (%pred)	98.6 (13.9)	100.9 (14.5)	95.1 (12.8)	94.7 (13.1)
BMI (percentile)	63.4 (26.2)	65.2 (24.9)	64.4 (28.4)	66.8 (25.0)
BMI categories⁴:
- At risk (<25^th)	113 (26.7%)	29 (7.7%)	12 (9.1%)	<5^*
- Borderline (25^th–50^th)	220 (52.0%)	77 (20.5%)	33 (25.0%)	14 (23.3%)
- Normal (50^th–85^th)	336 (79.4%)	173 (46.1%)	42 (31.8%)	22 (36.7%)
- Overweight/obese (≥85^th)	192 (45.4%)	96 (25.6%)	45 (34.1%)	20 (33.3%)
Nebulized medications:
- DNase	308 (72.6%)	195 (51.2%)	97 (70.8%)	46 (76.7%)
- HTS	204 (48.1%)	88 (23.1%)	68 (49.6%)	33 (55.0%)
- Tobramycin	156 (36.8%)	38 (10.0%)	23 (16.8%)	8 (13.3%)
Comorbidities / complications:
- IGT/CFRD	14 (3.3%)	<5^*	0 (0%)	<5^*
- CFLD	<5^*	0 (0%)	0 (0%)	<5^*
- Asthma	131 (31.1%)	52 (15.7%)	38 (28.6%)	20 (33.3%)

Categorical variables shown as n (%) and continuous variables as mean (SD), unless otherwise indicated. See Supplementary Table S1 for characteristics of pancreatic-insufficient (PI) cohort.

Median [IQR].

May add to more than the total number of patients and/or more than 100%, as categories are not mutually exclusive.

May add to more than the total number of patients and/or more than 100%, as categories are not mutually exclusive and/or patients may change insurance over time.

⁴

May add to more than the total number of patients and/or 100%, as they may have changed categories over time.

⁵

Lowest fecal elastase value recorded for each patient.

Per CF Foundation policy, exact values suppressed in cells with counts <5.

BMI: Body mass index. CFLD: CF liver disease. CFRD: CF-related diabetes. HTS: Hypertonic saline. IGT: Impaired glucose tolerance. NBS: Newborn screen.