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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