Table 1 Interview participant and care recipient demographic characteristics

Sex of interview participant,^a n (%)

 Male

8 (50.0)

4 (33.3)

12 (42.9)

 Female

8 (50.0)

8 (66.7)

16 (57.1)

Sex of patient^b with PH1 (interview participant in the case of patient interviewees; care recipient in the case of caregiver interviewees), n (%)

 Male

8 (50.0)

6 (50.0)

14 (50.0)

 Female

8 (50.0)

6 (50.0)

14 (50.0)

Patient^b age, mean (range), y

25.8 (16–51)

10.1 (6–16)

19.1 (6–51)

Patient^b kidney function/status, n (%)

 Normal

6 (37.5)

7 (58.3)

13 (46.4)

 Abnormal (without dialysis or transplantation)

3 (18.8)

2 (16.7)

5 (17.9)

 On dialysis

2 (12.5)^c

2 (16.7)

4 (14.3)

 Post-kidney and liver transplantation

5 (31.3)

1 (8.3)

6 (21.4)

Patient^b race/ethnicity, n (%)

 White

15 (93.8)

9 (75.0)

24 (85.7)

 Black

1 (6.3)

1 (8.3)

2 (7.1)

 Mixed

0 (0.0)

2 (16.7)

2 (7.1)

 Hispanic or Latino

1 (6.3)

1 (8.3)

2 (7.1)

Interview participant education,^a n (%)

 Less than high school

6 (37.5)

0 (0.0)

6 (21.4)

 High school or equivalent

0 (0.0)

2 (16.7)

2 (7.1)

 Associate or technical degree

0 (0.0)

1 (8.3)

1 (3.6)

 Some college but no degree

5 (31.3)

1 (8.3)

6 (21.4)

 College degree

4 (25.0)

7 (58.3)

11 (39.3)

 Graduate or professional degree

1 (6.3)

1 (8.3)

2 (7.1)