The quality of life of Spanish patients with Huntington's disease measured with H-QoL-I and EQ-5D

Figures & data

Fig. 1.  The Huntington Self-Assessment Instrument package.

Table 1. Patients’ demographics and disease history characteristics

	N=55
Demographic
Male, n (%)	27 (49.09%)
Age, years	49.66 (13.66)
Occupational category
Workers, n (%)	18 (40.00%)
Retired, n (%)	12 (26.67%)
Unemployed, n (%)	15 (33.33%)
Disease history
Age at onset of symptoms, years	41.25 (16.86)
Age at clinical diagnosis, years	44.12 (13.25)
Tested genetically, n (%)	51 (96.23%)

SD, standard deviation. Data are expressed as mean (SD), unless otherwise stated.

Table 2. Patients’ clinical characteristics

	N=55
Motor score
Voluntary movement score [0–20]	6.33 (5.71)
Stiffness [0–8]	2.20 (2.14)
Chorea [0–16]	5.19 (4.51)
Precise movement [0–8]	4.06 (2.46)
Behavioural score
Depression anxiety [0–20]	9.12 (5.01)
Temper [0–8]	2.81 (2.18)
Psychotic disorder [0–12]	1.35 (2.16)
Cognition [0–12]	3.52 (2.97)
Functional score
Functional score [0–7]	3.06 (2.53)

SD, standard deviation. Data from the Huntington Clinical Self-Reported Instrument (H-CSRI) instrument, a clinimetric patient-assessed scale for patients with Huntington's disease (12). Higher scores on the H-CRSI subscales indicate more severe symptoms than lower scores. Data are expressed as mean (SD), unless otherwise stated.

Fig. 2.  H-QoL-I dimensions and total scores.

Fig. 3.  H-QoL-I scores in function of patients’ severity as measured with the independence scale. Severity was categorized as 10–60 for the low independent group, 70–80 for the moderate independent group, and 90–100 for the highly independent group.

Fig. 4.  EQ-5D-3L dimensions scores.

Table 3. Pearson's correlations

	EQ-5D-3L utility scores
Item	Mobility	Self-care	Usual activities	Pain/discomfort	Anxiety/depression
H-QoL-I motor functioning score	0.69	0.78	0.78	0.48	0.38
H-QoL-I psychology score	0.44	0.38	0.49	0.41	0.44
H-QoL-I socialising score	0.58	0.56	0.63	0.46	0.22
H-QoL-I total score	0.67	0.67	0.73	0.52	0.43

Figures in bold are correlations>0.65.

Clay E, Dorey J, Toumi M, Tedroff J, Squitieri F, De NA, etal. Validation of the Huntington Clinical Self-Reported Instrument (H-CSRI), a clinimetric patient assessed scale for patients with Huntington's disease. Clin Genetics. 2011; 80(Suppl. 1): 38.

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