Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study

Background: Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have relatively good understanding the symptom patterns associated with various types ataxia, and how these diseases progress over time, their impact on person ataxia is less well understood. In addition, little known about carers, friends families affected by them. This paper aims to provide preliminary information presence medical symptoms day-to-day challenges people relatives. Method: Data were extracted from survey Ataxia UK for members. The views 366 52 relatives reported. Data analysed entire groups, as three most common represented sample, Friedreich’s inherited (excluding ataxia), cerebellar unknown cause. Results: The confirmed described previous research, but further showed can vary across populations. Similar findings observed challenges. Friends experienced similar indicating support provided has consider those supporting patient. Respondents also highlighted limitations terms accessing services, not all services able cater fully specific needs. Conclusion: This study begins be used research explore needs friends, relatives. Such will treatment trial design, ensuring patients’ considered, help tailor needs, ensure health care professionals necessary skills address them.