Table 1.
Characteristics of adult patients with glomerular disease and their caregivers who prioritized outcomes using focus groups with nominal group technique
| Characteristic | Australia, n=50 | Hong Kong, n=22 | United Kingdom, n=29 | United States, n=33 | All, N=134 |
|---|---|---|---|---|---|
| Patient | 38 (76) | 16 (73) | 24 (83) | 23 (70) | 101 (75) |
| Caregiver or family | 12 (24) | 6 (27) | 5 (17) | 10 (30) | 33 (25) |
| Sex | |||||
| Men | 29 (58) | 13 (59) | 14 (48) | 10 (30) | 66 (49) |
| Women | 21 (42) | 9 (41) | 15 (52) | 23 (70) | 68 (51) |
| Age group, yr | |||||
| 18–39 | 14 (28) | 3 (14) | 4 (14) | 11 (33) | 32 (24) |
| 40–59 | 20 (40) | 15 (68) | 8 (28) | 14 (42) | 57 (43) |
| 60–79 | 16 (32) | 4 (18) | 16 (55) | 6 (18) | 42 (32) |
| >80 | — | — | 1 (3) | 1 (3) | 2 (2) |
| Ethnicity | |||||
| White/European | 34 (68) | — | 24 (83) | 3 (9) | 61 (46) |
| Asian (Central, South, East) | 13 (26) | 22 (100) | 1 (3) | 2 (6) | 38 (28) |
| Hispanic | — | — | 1 (3) | 22 (67) | 23 (17) |
| African/black | — | — | 2 (7) | 4 (12) | 6 (4) |
| Other | 3 (6) | — | 1 (3) | 2 (6) | 6 (4) |
| Educational attainmenta | |||||
| Primary school | 4 (11) | 4 (25) | 5 (21) | 8 (35) | 21 (21) |
| Secondary school (grade 10) | 5 (13) | 3 (19) | 1 (4) | 1 (4) | 10 (10) |
| Secondary school (grade 12) | 6 (16) | 3 (19) | 2 (8) | 5 (22) | 16 (16) |
| Certificate/diploma | 9 (24) | — | 7 (29) | 6 (26) | 22 (22) |
| University degree | 14 (37) | 6 (38) | 7 (29) | 3 (13) | 30 (30) |
| Employmenta | |||||
| Full time or part time | 22 (58) | 8 (50) | 6 (25) | 4 (17) | 40 (40) |
| Student | 1 (3) | — | — | 3 (13) | 4 (4) |
| Not employed | 4 (11) | 4 (25) | 3 (13) | 10 (43) | 21 (21) |
| Other/retired | 11 (29) | 4 (25) | 14 (58) | 5 (22) | 34 (34) |
| Type of glomerular diseasea | |||||
| Lupus nephritis | 6 (16) | 2 (13) | 6 (25) | 4 (17) | 18 (18) |
| Vasculitis | 6 (16) | — | 7 (29) | 5 (22) | 18 (18) |
| IgA nephropathy | 10 (26) | 5 (31) | 2 (8) | 1 (4) | 18 (18) |
| FSGS | 6 (16) | — | — | 4 (17) | 10 (10) |
| Membranous nephropathy | 3 (8) | 1 (6) | 1 (4) | 1 (4) | 6 (6) |
| Minimal change nephropathy | 2 (5) | — | 1 (4) | 2 (9) | 5 (5) |
| MPGN | 1 (3) | — | — | 5 (22) | 6 (6) |
| C3 glomerulopathy | 2 (5) | — | 3 (13) | — | 5 (5) |
| Anti-GBM disease | 1 (3) | — | — | — | 1 (1) |
| IgG4-related disease | 1 (3) | — | — | — | 1 (1) |
| Years since diagnosisa | |||||
| ≤2 | 11 (29) | 1 (6) | 8 (33) | 10 (43) | 30 (30) |
| 3–11 | 14 (37) | 3 (19) | 7 (29) | 7 (30) | 31 (31) |
| ≥12 | 13 (34) | 11 (69) | 6 (25) | 4 (17) | 34 (34) |
| Immunosuppression exposurea | |||||
| Any | 30 (79) | 9 (56) | 17 (71) | 17 (74) | 73 (74) |
| Corticosteroids | 26 (68) | 7 (44) | 14 (58) | 13 (57) | 60 (60) |
| Antiproliferative/calcineurin inhibitor | 20 (53) | 3 (19) | 12 (50) | 6 (26) | 41 (41) |
| Cyclophosphamide | 9 (24) | — | 6 (25) | 12 (52) | 27 (27) |
| Plasma exchange | 7 (18) | — | 5 (21) | 5 (22) | 17 (17) |
| Biologic agent | 2 (5) | — | 3 (13) | 2 (9) | 7 (7) |
| Stage of kidney diseasea | |||||
| CKD | 31 (82) | 4 (25) | 13 (54) | 18 (78) | 66 (65) |
| Hemodialysis | 3 (8) | 3 (19) | 3 (13) | 5 (22) | 14 (14) |
| Peritoneal dialysis | 2 (5) | 8 (50) | — | 3 (13) | 13 (13) |
| Living donor transplant | 1 (3) | 1 (6) | 1 (4) | 1 (4) | 4 (4) |
| Deceased donor transplant | 1 (3) | 5 (31) | 4 (17) | 1 (4) | 11 (11) |
MPGN, membranoproliferative GN; GBM, glomerular basement membrane.
a
Patients only. May not sum to totals because some categories represent overlapping experience. Thirteen patients did not know their type of glomerular disease. One patient was missing for age; two patients had missing data for education and immunosuppression. Six patients had missing years since diagnosis; six patients had data missing for kidney disease stage.