Characteristics | Patient Interviewees (Adults and Adolescents) N = 16 | Caregiver Interviewees on Behalf of Care Recipients (Children Aged 6–16 Years) N = 12 | Total N = 28 |
---|---|---|---|
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 patientb 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) |
Patientb age, mean (range), y | 25.8 (16–51) | 10.1 (6–16) | 19.1 (6–51) |
Patientb 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) |
Patientb 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) |