100 80 60 40 ing 20 t ra 0 n a e m xe100 Ind 80 ry 60 a m 40 m u 20 S yx 0 o r p r o t n e i t a P 100 80 60 40 20 0 100 80 60 40 20 0 100 80 60 40 20 0 100 80 60 40 20 0 100 80 60 40 20 0 Summary Index Early Moderate Advanced Stage of HD 1796 Table 1 Participant demographics and self-reported HrQoL scores, with mean ± SD and range EQ-5D EuroQol questionnaire, SF-12v2 Short-Form Health Questionnaire, 12-item version 2 Number of subjects Female/male Age Full-time education (years) Full or part-time employment/ retired or unemployed EQ-5D Visual Analogue Scale (VAS) EQ-5D Index Score SF-12v2 Physical Component Score (PCS) SF-12v2 Mental Component Score (MCS) Persons with HD 105 61/44 56.42 ± 12.82 (17:90) 13.77 ± 4.50 (4:35) 20/85 58.38 ± 23.20 (0:100) 0.56 ± SD = 0.35 (-0.33:1) 41.52 ± 12.78 (16.33:66.20) 75.31 ± 20.31 (0:100) 0.78 ± 0.22 (-0.04:1) 50.67 ± 8.94 (30.05:64.73) 39.95 ± 11.50 (13.89:67.34) 43.85 ± 11.25 (11.83:70.29) J Neurol (2012) 259:1793–1800 Proxies 105 55/50 56.55 ± 12.89 (17:90) 13.25 ± 4.07 (0:25) 49/56 Cognitive Hopes & Worries Services Early Moderate Advanced Early Moderate Advanced Early Moderate Advanced Physical & Functional Mood State Self & Vitality Early Moderate Advanced Early Moderate Advanced Early Moderate Advanced Fig. 1 Mean ratings by patients (white bars) and proxies (dark bars) ±SE, on the six Speciﬁc Scales and Summary Score of the HDQoL. Means are shown separately for Early stage HD (n = 36), Moderate stage HD (n = 18) and Advanced stage HD patients (n = 50) greater than ±1.96). One outlier pair (patient score of 27 and proxy score of 59) was the one whose patient did not report their HD stage (and is therefore missing from the plot). Among the remaining seven outlier pairs, two patients were Early stage, four Moderate and one Advanced. Thus, outliers were signiﬁcantly more likely to come from the Moderate HD subgroup than the other subgroups, Fisher Exact p = 0.016. Information supplied by the proxy implies that the patient in the eighth pair, missing from the analysis, also probably had Moderate HD. We explored other potential associates, including gender of patient and proxy, nature of proxy–patient relationship, proxy’s own HrQoL and frequency of contact. None were signiﬁcant, and there was only a trend for proxy gender, Fisher Exact p = 0.061; seven out of eight outlier proxies were male compared to 43 out of 97 others. This effect is 123