Table 1 Baseline Characteristics of VHL-CNS-Hb/VHL-pNET and Control Cohorts

Demographic characteristics

Female, N (%)

136

(61.8%)

678

(61.6%)

12

(60.0%)

60

(60.0%)

Age at index date (years), mean ± SD

49.0

± 11.3

49.0

± 11.2

47.1

± 14.1

47.1

± 13.8

Geographic region, N (%)

Northeast

22

(10.0%)

107

(9.7%)

< 5

-

8

(8.0%)

Midwest

51

(23.2%)

284

(25.8%)

5

(25.0%)

19

(19.0%)

South

108

(49.1%)

479

(43.5%)

10

(50.0%)

51

(51.0%)

West

38

(17.3%)

220

(20.0%)

< 5

-

22

(22.0%)

Unknown

< 5

-

10

(0.9%)

< 5

-

< 5

-

Health insurance type, N (%)

EPO

19

(8.6%)

108

(9.8%)

< 5

-

8

(8.0%)

PPO

17

(7.7%)

42

(3.8%)

< 5

-

5

(5.0%)

POS

123

(55.9%)

723

(65.7%)

12

(60.0%)

74

(74.0%)

HMO

44

(20.0%)

184

(16.7%)

< 5

-

10

(10.0%)

Other¹

19

(8.6%)

42

(3.8%)

< 5

-

< 5

-

Disease characteristics

Year of index date, N (%)

2018 − 2012

85

(38.6%)

425

(38.6%)

8

(40.0%)

40

(40.0%)

2013–2016

75

(34.1%)

375

(34.1%)

< 5

-

10

(10.0%)

2017–2020

60

(27.3%)

300

(27.3%)

10

(50.0%)

50

(50.0%)

Comorbidities

CCI, mean ± SD

2.0

± 2.6

0.4

± 1.0

***

2.8

± 3.6

0.3

± 0.8

***

Comorbidities, N (%)

Hypertension

100

(45.5%)

327

(29.7%)

***

11

(55.0%)

28

(28.0%)

*

Depression/anxiety

73

(33.2%)

181

(16.5%)

***

9

(45.0%)

19

(19.0%)

*

Chronic pulmonary disease

54

(24.5%)

103

(9.4%)

***

< 5

-

12

(12.0%)

Diabetes

34

(15.5%)

108

(9.8%)

*

7

(35.0%)

5

(5.0%)

**

Osteoporosis/fractures

30

(13.6%)

59

(5.4%)

***

< 5

-

6

(6.0%)

Liver disease

37

(16.8%)

33

(3.0%)

***

< 5

-

< 5

-

*

Cerebrovascular disease

51

(23.2%)

27

(2.5%)

***

< 5

-

< 5

-

Congestive heart failure

8

(3.6%)

23

(2.1%)

< 5

-

< 5

-

Peripheral vascular disease

19

(8.6%)

22

(2.0%)

***

< 5

-

< 5

-

Renal disease

24

(10.9%)

20

(1.8%)

***

< 5

-

< 5

-

Cancer

50

(22.7%)

43

(3.9%)

***

7

(35.0%)

< 5

-

**

Annual HRU during baseline, mean ± SD

Inpatient visits

0.7

± 1.7

0.1

± 0.6

***

1.5

± 3.7

0.1

± 0.5

Inpatient days

2.9

± 7.4

0.8

± 7.5

***

4.0

± 5.9

0.3

± 1.0

*

ED visits

1.8

± 4.7

0.6

± 1.8

***

0.5

± 0.8

1.0

± 3.7

Outpatient visits

15.2

± 10.6

7.7

± 8.8

***

20.1

± 11.3

7.1

± 8.3

***

Other visits²

1.8

± 2.9

0.8

± 2.2

***

2.1

± 3.2

0.5

± 1.3

*

Annual healthcare costs during baseline, mean ± SD

Total costs

$44,688

± $92,113

$9,102

± $40,331

***

$51,768

± $76,003

$5,911

± $13,839

**

Medical costs

$38,869

± $87,536

$7,371

± $39,206

***

$46,657

± $75,751

$3,309

± $6,529

**

Inpatient costs

$21,270

± $75,640

$3,435

± $34,478

***

$9,443

± $13,806

$916

± $4,409

**

ED costs

$3,600

± $12,781

$635

± $2,579

***

$1,244

± $2,191

$443

± $1,458

Outpatient costs

$13,519

± $36,804

$3,122

± $11,500

***

$35,221

± $76,519

$1,917

± $3,364

*

Other costs²

$480

± $2,513

$178

± $1,685

*

$749

± $1,514

$33

± $106

*

Pharmacy costs

$5,819

± $22,709

$1,731

± $7,090

**

$5,112

± $9,488

$2,602

± $11,823