Table 3.

Annual direct out-of-pocket costs (US$)a for medical, diet, and other special products

Cost CategoryAdult (N=28)Family Caregiver (N=17)
# Reporting, n (%)Costs (US$), Median (Interquartile Range)# Reporting, n (%)Costs (US$), Median (Interquartile Range)
Diagnosis16 (57)725 (89–3445)9 (53)140 (40–1000)
Total medication25 (89)210 (75–484)16 (94)54 (22–210)
Dialysis5 (18)0 (0–0)2 (12)850 (475–1225)
Kidney transplant3 (11)3350 (1900–5275)1 (6)1800 (1800–1800)
Diet16 (57)1140 (600–2400)12 (71)750 (388–1008)
Special producta16 (57)38 (0–73)13 (77)26 (0–50)
Emergency room4 (14)330 (160–521)1 (6)10 (10–10)
Hospitalization6 (21)918 (178–1485)4 (24)150 (83–1325)
Nephrology visit26 (93)80 (41–140)16 (94)76 (54–110)
Primary care provider visit19 (68)42 (23–92)15 (88)40 (21–83)
Specialist visitb9 (32)165 (72–360)6 (35)95 (39–485)
Psychiatry visit4 (14)15 (8–25)0 (0)
Other servicesc8 (29)90 (62–186)3 (18)70 (50–1135)
Annual total costs per patient28 (100)3464 (844–5865)16 (94)1687 (1035–4763)
  • a Special products include blood pressure monitors, urine dipsticks, and other cleaning products.

  • b Specialists include geneticists, cardiologists, dermatologists, pulmonologists, and optometrists.

  • c Other services include nutrition counseling, genetic counseling, behavioral therapy, social work, and the dentist.