Background Literature is scare on factual data about the burden of illness of Huntington’s disease (HD).
Aims This study, conducted in Spain as a part of an international survey, evaluated the quality of life (QoL) of patients with HD and their caregivers, and the economic burden of HD, from patient and caregiver perspectives.
Methods The hospital “Hospital Ramon y Cajal” provided their patients with two self-reported questionnaires (one for the patient and one for his/her caregiver). Patients were asked to complete clinical (motor, behavioural, functional, independence), QoL and resource-utilisation data questionnaires. Caregivers reported their burden and QoL.
Results 59 patients and 60 caregivers were included in the study. The mean (±SD) age of patients was 49.66 (13.66) years and 51% were female. 96% of patients had taken a genetic test for HD. QoL, as measured by the EuroQoL 5D, was reduced in a significant proportion of patients across all domains: mobility (walking difficulties; 62.07%), self-care (52.63%), usual activities (61.82%), pain/discomfort (30.91%) and anxiety/depression (63.16%). The mean (±SD) health utility derived from the EuroQoL 5D was 0.54 (0.43). The average (±SD) number of monthly visits to a physician ranged from 0.13 (0.57) for geriatricians to 2.23 (4.76) for GPs, and from 0.16 (0.80) to 1.61 (5.82) for paramedical services. Fourteen per cent were admitted to hospital in the last 6 months. Caregivers reported spending considerable time caring for patients, and generally also had a reduced QoL.
Conclusions These data confirm the burden of HD on the Spanish society, patients and caregivers. This highlights the need for patient and caregiver support. Further analysis, including costing and determinants of cost of illness, will be presented.