Towards improved mental quality of life in ataxias: Characterising psychological function and its correlates

Principal researcher: Dr Louisa Selvadurai, Monash University (Australia) 

Scientific Summary: 

Individuals with ataxia often experience cognitive and emotional challenges, such as low mood and word-finding difficulties (psychological symptoms), in addition to movement symptoms. These can negatively impact occupational, interpersonal, and day-to-day wellbeing.  

Although psychological symptoms are common in ataxias, they are currently under-recognised in medical care. The research team’s preliminary work undertaking focus groups and surveys with people with ataxia demonstrates a high prevalence of psychological symptoms and highlights the perceived importance of developing guidance for the patient community and healthcare providers regarding these difficulties.  

In this project, the researchers will recruit 100 people with ataxia to assess a broad profile of psychological symptoms, associated factors, and impact on daily life via an online survey. People with ataxia will complete the new Cerebellar Neuropsychiatric Rating Scale-Version 2, capturing psychological symptoms relevant to cerebellar diseases, together with validated questionnaires assessing coping styles, motor symptoms, and daily activities. The assessment will also include a questionnaire about ataxia-specific psychosocial stressors, developed in collaboration with patients. The team will additionally recruit health professionals working with ataxias to complete questionnaires about recognising and managing these issues in their practice.  

Together, the project aims to ensure that the psychological aspects of ataxia are better understood and effectively supported and treated.  

Lay Summary:  

People with progressive cerebellar ataxias can experience changes in areas such as their mood and thinking skills (psychological changes). Examples include feelings of low mood, or difficulties with multitasking. These can have important impacts on individuals’ relationships, work performance, and daily living, but are not always recognised and addressed by health professionals. There may be different reasons why mood and thinking are affected in cerebellar ataxias. The cerebellum, the key part of the brain affected in cerebellar ataxias, has a role in mood and thinking, meaning that these difficulties may be due to changes in the brain. Additionally, the challenges associated with living with a progressive ataxia and the associated physical symptoms can also impact people’s emotions. Examples of these challenges include being unable to take part in enjoyed activities and experiencing discrimination. Currently, researchers don’t understand in detail the patterns of these psychological changes in ataxia, and what factors might influence them. This limits our ability to provide individuals with ataxia and their family and friends with appropriate, tailored education and treatments. 

This project aims to better understand psychological changes in people with a range of degenerative cerebellar ataxias, as well as learn more about how ataxia health professionals help with these symptoms in the clinic. The team aims to understand the patterns of psychological difficulties in ataxias by asking individuals with ataxia to complete an online questionnaire about psychological symptoms they may experience, and comparing their responses to people without ataxia. 

The researchers will also ask people with ataxia to complete other online questionnaires about their daily activities, how they cope with difficult situations, how they are impacted by challenges associated with ataxia, and their ataxia motor symptoms. This will allow the researchers to look at what factors might underlie psychological difficulties – for example, are people more likely to experience psychological challenges if they have more motor symptoms? The researchers will also be able to evaluate the impact that psychological difficulties might have on individuals’ ability to complete daily activities.  

Additionally, the researchers will ask ataxia healthcare professionals to complete an online survey to learn about their knowledge of psychological symptoms in ataxia, and how they support people with these issues.  

The study will provide important new information about psychological symptoms in ataxias, which can be used to 1) provide updated education to people with ataxia, their close others, and healthcare professionals, and 2) help researchers design targeted interventions to support wellbeing in people with ataxia, as part of future research. This will help move towards improved psychological support and wellbeing for people living with ataxias. 

For more support or information please contact:   
Ataxia UK, 12 Broadbent Close, London, N6 5JW  
Website: www.ataxia.org.uk.    
Helpline: 0800 995 6037 Tel: +44 (0)20 7582 1444    
Email: helpline@ataxia.org.uk.