Table 2 Health-related quality of life
From: Health-related quality of life in a european sample of adults with early-treated classical PKU
Module | Domain | Total n = 124 | Hungary n = 66 | Italy n = 5 | Spain n = 7 | Switzerland n = 30 | Turkey n = 16 |
|---|---|---|---|---|---|---|---|
Symptoms | Self-rated health status | 50 (25–50)3 | 50 (25–75)3 | 50 (25–63) | 50 (25–75) | 25 (0–50) | 50 (25–50) |
Headaches | 25 (0–50)2 | 25 (0–50)2 | 25 (13–50) | 25 (0–50) | 25 (0–50) | 25 (0–50) | |
Stomach Aches | 0 (0–25)3 | 0 (0–25)3 | 25 (0–50) | 0 (0–50) | 0 (0–25) | 25 (0–25) | |
Tiredness | 50 (25–50)2 | 50 (25–50)2 | 50 (13–75) | 50 (50–75) | 25 (0–50) | 38 (7–69) | |
Lack of concentration | 25 (0–50)3 | 25 (0–50)3 | 50 (13–75) | 50 (25–50) | 25 (0–50) | 25 (0–44) | |
Slow thinking | 0 (0–25)2 | 0 (0–44) 2 | 25 (0–63) | 25 (0–50) | 0 (0–25) | 13 (0–25) | |
Trembling hands | 0 (0–25) | 0 (0–25) | 0 (0–50) | 0 (0–25) | 0 (0–0) | 0 (0–25) | |
Irritability | 25 (0–50)2 | 25 (0–50)2 | 25 (13–63) | 25 (25–50) | 25 (0–50) | 25 (6–25) | |
Aggressiveness | 0 (0–25)1 | 0 (0–25)1 | 0 (0–50) | 25 (0–50) | 0 (0–0) | 0 (0–19) | |
Moodiness | 25 (0–50) | 25 (0–50) | 25 (25–75) | 50 (50–100) | 13 (0–31) | 38 (25–50) | |
Sadness | 0 (0–50)1 | 0 (0–50)1 | 25 (13–50) | 25 (25–50) | 0 (0–6) | 38 (25–50) | |
Anxiety | 0 (0–50)1 | 25 (0–50)1 | 25 (0–63) | 50 (50–75) | 0 (0–0) | 25 (0–50) | |
PKU in general | Emotional impact of PKU | 35 (20–50)3 | 35 (20–50)3 | 40 (35–63) | 50 (45–60) | 20 (15–30) | 40 (35–60) |
Practical impact of PKU | 13 (0–25)18 | 13 (0–25)5 | 19 (4–29) | 31 (25–31) | 8 (6–18) | - 13 | |
Social impact of PKU | 11 (0–19)2 | 7 (0–19)2 | 19 (15–25) | 25 (19–31) | 6 (0–13) | 17 (8–25) | |
Overall impact of PKU | 21 (12–31)4 | 21 (13–30)4 | 25 (23–42) | 37 (33–42) | 13 (10–17) | 35 (20–44) | |
Anxiety - Blood test | 0 (0–0)7 | 0 (0–13)7 | 0 (0–13) | 0 (0–50) | 0 (0–0) | 0 (0–10) | |
Anxiety - Phe levels | 25 (25–75)1 | 25 (0–63)1 | 50 (50–63) | 75 (75–100) | 25 (25–31) | 50 (25–75) | |
Anxiety - Phe levels during pregnancy | 75 (25–100) | 50 (25–100) | 75 (50 - NA) | 100 (75–100) | 75 (25–88) | 75 (25–100) | |
Financial impact of PKU | 25 (0–50)1 | 0 (0–25)1 | 0 (0–13) | 75 (50–100) | 25 (0–31) | 25 (0–50) | |
Information on PKU | 25 (0–50)3 | 25 (0–50)3 | 50 (13–50) | 50 (25–50) | 25 (0–25) | 25 (0–44) | |
Supplement administration | Adherence to supplements | 8 (2–33)28 | 8 (0–31)14 | 50 (33–63) | 8 (0–25) | 8 (4–25)1 | - 13 |
Guilt if poor adherence to supplements | 25 (25–75)6 | 38 (25–75)6 | 50 (25–50) | 25 (0–25) | 25 (25–50) | 25 (25–50) | |
Impact of supplements on family | 0 (0–0)5 | 0 (0–0)5 | 0 (0–50) | 0 (0–0) | 0 (0–0) | 0 (0–25) | |
Practical impact of supplements | 6 (0–25)7 | 0 (0–13)7 | 25 (13–31) | 38 (31–44) | 6 (0–13) | 38 (19–69) | |
Taste - Supplements | 50 (25–50)8 | 50 (25–50)8 | 50 (50–63) | 50 (25–50) | 25 (25–50) | 50 (6–50) | |
Dietary protein restriction | Food temptation | 32 (0–50)6 | 25 (0–50)5 | 63 (44–75) | 50 (25–50) | 25 (13–50)1 | 19 (0–50) |
Adherence to dietary protein restriction | 19 (6–30)17 | 19 (10–34)10 | 35 (28–58) | 25 (13–25) | 13 (5–25)1 | 25 (6–33)6 | |
Practical impact of dietary protein restriction | 29 (15–39)9 | 25 (11–36)8 | 39 (27–54) | 39 (25–50) | 21 (11–34)1 | 54 (39–75) | |
Social impact of dietary protein restriction | 4 (0–13)6 | 5 (0–13)6 | 25 (15–38) | 4 (0–33) | 0 (0–4) | 13 (5–29) | |
Overall impact of dietary protein restriction | 17 (10–29)9 | 17 (9–25)8 | 29 (23–46) | 27 (13–52) | 13 (7–18)1 | 35 (29–46) | |
Overall difficulty following dietary protein restriction | 25 (0–50)7 | 25 (0–50)7 | 50 (25–75) | 0 (0–50) | 25 (0–25) | 50 (0–50) | |
Guilt if dietary protein restriction not followed | 50 (25–75)6 | 50 (25–75)6 | 50 (25–63) | 75 (50–75) | 25 (25–56) | 75 (38–94) | |
Taste - Low-protein food | 25 (25–50)9 | 25 (25–50)6 | 50 (50–50)1 | 25 (25–25) | 25 (0–25)2 | 25 (0–50) | |
Food enjoyment | 0 (0–25)8 | 0 (0–25)6 | 75 (50–75) | 0 (0–25) | 0 (0–0) | 25 (25–88) |