Table 1.

Characteristics of adult patients with glomerular disease and their caregivers who prioritized outcomes using focus groups with nominal group technique

CharacteristicAustralia, n=50Hong Kong, n=22United Kingdom, n=29United States, n=33All, N=134
Patient38 (76)16 (73)24 (83)23 (70)101 (75)
Caregiver or family12 (24)6 (27)5 (17)10 (30)33 (25)
Sex
 Men29 (58)13 (59)14 (48)10 (30)66 (49)
 Women21 (42)9 (41)15 (52)23 (70)68 (51)
Age group, yr
 18–3914 (28)3 (14)4 (14)11 (33)32 (24)
 40–5920 (40)15 (68)8 (28)14 (42)57 (43)
 60–7916 (32)4 (18)16 (55)6 (18)42 (32)
 >801 (3)1 (3)2 (2)
Ethnicity
 White/European34 (68)24 (83)3 (9)61 (46)
 Asian (Central, South, East)13 (26)22 (100)1 (3)2 (6)38 (28)
 Hispanic1 (3)22 (67)23 (17)
 African/black2 (7)4 (12)6 (4)
 Other3 (6)1 (3)2 (6)6 (4)
Educational attainmenta
 Primary school4 (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/diploma9 (24)7 (29)6 (26)22 (22)
 University degree14 (37)6 (38)7 (29)3 (13)30 (30)
Employmenta
 Full time or part time22 (58)8 (50)6 (25)4 (17)40 (40)
 Student1 (3)3 (13)4 (4)
 Not employed4 (11)4 (25)3 (13)10 (43)21 (21)
 Other/retired11 (29)4 (25)14 (58)5 (22)34 (34)
Type of glomerular diseasea
 Lupus nephritis6 (16)2 (13)6 (25)4 (17)18 (18)
 Vasculitis6 (16)7 (29)5 (22)18 (18)
 IgA nephropathy10 (26)5 (31)2 (8)1 (4)18 (18)
 FSGS6 (16)4 (17)10 (10)
 Membranous nephropathy3 (8)1 (6)1 (4)1 (4)6 (6)
 Minimal change nephropathy2 (5)1 (4)2 (9)5 (5)
 MPGN1 (3)5 (22)6 (6)
 C3 glomerulopathy2 (5)3 (13)5 (5)
 Anti-GBM disease1 (3)1 (1)
 IgG4-related disease1 (3)1 (1)
Years since diagnosisa
 ≤211 (29)1 (6)8 (33)10 (43)30 (30)
 3–1114 (37)3 (19)7 (29)7 (30)31 (31)
 ≥1213 (34)11 (69)6 (25)4 (17)34 (34)
Immunosuppression exposurea
 Any30 (79)9 (56)17 (71)17 (74)73 (74)
 Corticosteroids26 (68)7 (44)14 (58)13 (57)60 (60)
 Antiproliferative/calcineurin inhibitor20 (53)3 (19)12 (50)6 (26)41 (41)
 Cyclophosphamide9 (24)6 (25)12 (52)27 (27)
 Plasma exchange7 (18)5 (21)5 (22)17 (17)
 Biologic agent2 (5)3 (13)2 (9)7 (7)
Stage of kidney diseasea
 CKD31 (82)4 (25)13 (54)18 (78)66 (65)
 Hemodialysis3 (8)3 (19)3 (13)5 (22)14 (14)
 Peritoneal dialysis2 (5)8 (50)3 (13)13 (13)
 Living donor transplant1 (3)1 (6)1 (4)1 (4)4 (4)
 Deceased donor transplant1 (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.