Background Huntington’s disease (HD) is a neurodegenerative disorder with wide-ranging effects on motor, cognitive and behavioural effects and a great impact on patient’s health- related quality of life (HRQoL). HRQoL measures are increasingly used in clinical assessment to evaluate intervention effectiveness. Such assessments allow decision makers to consider patient and caregiver perspectives.
Aims Health Related Quality of Life (HRQoL) is critical for assessing the effects of Huntington’s disease (HD). The objective of the study was to assess the HRQoL of HD patients in Italy and to compare the results provided by EQ-5D, SF-36 and H-QoL-I.
Methods This was an observational, cross-sectional study conducted in Italy on the HRQoL of HD patients. HD Patients were recruited through a neurologist with the support of the association “AICH NEUROMED”. Patients voluntarily completed the EQ-5D, SF-36 and H-QoL-I instruments.
Results 124 patients were recruited. The mean ± SD age was 53.6 ± 12.2 years; 53.2% were female. Results from H-QoL-I indicated that motor dimension was the most altered, followed by the psychological dimension (scores: 43.96 and 48.66 respectively) whereas social dimension was less altered (score 68.38). Self-care and usual activities were the most altered domains on the EQ-5D whereas pain was the least altered dimension. Role-physical limitations and role-emotional limitations were the most altered dimensions on the SF-36 whereas bodily pain was the least altered dimension (scores: 31.62, 35.00, and 75.07 respectively).
Conclusion The HRQoL of the Italian HD patients was highly affected by their disease. Consistent results were found between the three instruments: motor and psychological dimensions were the most affected whereas pain dimension was least affected. Better therapeutic options to improve HD motor function, and hence, HRQoL are needed.