In this study, researchers at the University of Southampton looked at the impact of ataxia symptoms on self-reported mental wellbeing in adults in the UK. They compared findings, collected from an online survey, between different ataxias and between the ataxia group and a group of healthy controls. Understanding the link between ataxia symptoms and mental health can help to find more targeted treatments for the ataxias.
Survey results were collected from 110 participants with ataxia (51 hereditary, 16 acquired and 43 idiopathic) as well as 32 healthy controls. The survey was distributed through social media and through the Ataxia UK channels. Thank you to everyone who took part in this study.
The study found that those with ataxias scored significantly higher on self-reported levels of depression, anxiety, fatigue and cognitive difficulties than healthy controls. Experience of mental health difficulties was similar regardless of the type of ataxia, and found that both symptom severity and mental health difficulties were greater the longer it had been since diagnosis. The study found a significant positive correlation between symptom severity and levels of depression, anxiety and cognitive difficulties. Depression, anxiety, fatigue and cognitive difficulties were highly linked, meaning that people with ataxia are likely to experience more than one of these together, known as co-morbidity.
These findings highlight the importance of early intervention at the stage of diagnosis to reduce mental health issues in the ataxias. The survey used in the study known as the short-form patient-reported outcome measure (PROM-SF) may be a useful tool in collecting self-reported measures of ataxias whilst mitigating some of the recruitment barriers to ataxia research.
Read the paper here.
If you are interested in taking part in surveys on living with ataxia, read more here.