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Table 2 Clinical characteristics and NPCS scores for the total sample and all disease stages

From: Health-related quality of life and unmet healthcare needs in Huntington’s disease

Variables

 

Complete sample (N =84)

Stage I (n = 12)

Stage II (n = 22)

Stage III (n = 19)

Stage IV (n = 14)

Stage V (n = 17)

Sign.

Median (IQR)

Median (IQR)

Median (IQR)

Median (IQR)

Median (IQR)

Median (IQR)

Disease duration

 

6 (7)

2 (2)

5 (6)

7 (5)

8 (7)

11 (7)

P < 0.001

Total FAS score

 

15 (17)

24 (2)

20 (2)

15 (4)

5 (3)

0 (2)

P < 0.001

Independence scorea

 

60 (26.5)

95.8 (5.1)

79.1 (2.9)

64.7 (6.3)

40.4 (10.8)

20.9 (5.7)

P < 0.001

  

n (%)

n (%)

n (%)

n (%)

n (%)

n (%)

P-value (2-sided)

Comorbid conditions

No (ne)

48 (57.1)

7 (58)

9 (41)

9 (47)

10 (71)

13 (76)

0.143

Yes

36 (42.9)

5 (42)

13 (59)

10 (53)

4 (29)

4 (24)

 

NPCS variables

 

Median (IQR)

Median (IQR)

Median (IQR)

Median (IQR)

Median (IQR)

Median (IQR)

Sign.

Total scoreb

Needs

21 (17)

7.5 (6)

11 (6)

23 (12)

29 (7)

28 (10)

P < 0.001

Gets

13 (16)

3 (3)

6.5 (8)

13.5 (12)

21 (7)

21 (10)

P < 0.001

Unmet needs

6 (6)

3 (4)

5 (4)

8 (7)

6.5 (10)

6 (9)

P = 0.013

Domain score Health and personal care

Needs

11 (7)

6 (5)

7.5 (5)

11.5 (5)

13.5 (5)

14 (3)

P < 0.001

Gets

8 (6)

2.5 (2)

5 (6)

6.5 (6)

9 (4)

9 (7)

P < 0.001

Unmet Needs

3 (4)

2 (3)

2.5 (3)

5 (4)

4 (5)

4 (6)

P = 0.028

Domain score Sosial care and supportc

Needs

10 (10)

2 (3)

4 (2)

11 (7)

13.5 (8)

14 (2)

P < 0.001

Gets

5 (10)

0 (1)

1.5 (2)

5.5 (6)

11.5 (4)

11 (3)

P < 0.001

Unmet needs

2 (3)

1 (3)

2 (2)

2.5 (5)

2 (6)

2 (4)

P = 0.053

  1. FAS Functional Assessment Scale, IQR Interquartile range, anormally distributed: reported mean (sd) and Anova; bone missing from stage III; cone missing from stage III; Needs = NPCS Part A; Gets = NPCS Part B