PO093 Living with ataxia in ireland 2016 – a nationwide survey

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Abstract

In Ireland a handful of neurologists manage the majority of people with inherited ataxia. With little information in the literature and with the support of the national patient organisation we aimed to collect real-life data from a large cohort of patients with inherited ataxia. We focused on the individual ataxia-related healthcare resources and costs, disability and quality of life (QoL) measures and comparison of patients’ responses from a heterogeneous population across groups of all ages, different genetic causes and disease durations. Over 250 anonymous surveys were distributed nationwide. One hundred and thirty four patients (45.5% males) responded. Nine percent were working, 52% were unable to work or retired early due to ataxia. Sixty-seven percent were wheelchair-bound. Fifty-nine percent had symptom onset <20 years, 23% had onset >40 years. As expected, the majority (42%) had Friedreich’s ataxia, 30% did not have genetic diagnosis. Forty-five percent relied on professionally paid care. Group comparisons and QoL data will be reported. To date this is the first study in Ireland and the largest single-country ‘real-life’ patient survey in Europe looking at patients with various types of inherited ataxia with comprehensive data on disability, healthcare resource use and QoL.

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