Ataxia UK worked closely with the London Ataxia Centre researchers and other experts on a research study assessing the impact of Specialist Ataxia Centres in Europe. This was part of the Value of Treatment (VOT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the lives of Europeans with brain conditions.
The project highlights the impact of neurological disorders and improves care and outcomes for Europeans with conditions including ataxia. Ataxia UK’s Head of Research Julie Greenfield says:
“This project involved many partners, including researchers, policy experts and patient groups in Italy and Germany. We are also very grateful to all the people affected by ataxia who took part in this important research”.
A large survey was administered to people with ataxia in the UK, Germany and Italy, to gather information about diagnosis and management of their ataxias and healthcare resource use and costs per person in specialist ataxia centres (SACs) or non-specialist settings. The results of the study are published in the Orphanet Journal of Rare Diseases as two separate papers.
For the first part of the study, 552 people with several ataxias (or their parents/ caregivers) in the UK (277), Germany (101) and Italy (174) shared their experience of the diagnosis and management of their ataxias in SACs or non-specialist settings. Satisfaction was higher in the SAC group, across understanding of their condition, management of their ataxia, delivering care adapted to needs, coordinating referrals to healthcare specialists, and offering opportunities to take part in research.
For those who had not been to an SAC, or stopped attending, there were two key barriers to attending in all three countries. These were difficulties travelling to an SAC and a lack of a re-referral system to an SAC. In the UK, over half of respondents said primary healthcare practitioners neither had a good understanding of their ataxia nor had a good knowledge of treatments. 91% of the SAC group gave positive feedback on the SAC in understanding of ataxia, and 85% gave positive feedback on knowledge of healthcare practitioners about ataxia treatments.
Feedback was less negative for patients’ experiences of visits to secondary healthcare practitioners (including neurologists), in all three countries. In the UK, for the understanding of the management of their ataxia, there was negative feedback by 37% of participants, and in terms of knowledge about treatments, negative feedback was given by 52% of participants.
Survey participants shared how they thought their treatment and care could be improved:
• Earlier specific diagnosis
• Improvement and sharing of information about the condition and available treatments
• Advice to feel in control of the condition, and practical advice on living with the condition
• Better access to therapies and better management of their symptoms
• Advice on adapting their home
• Advice on maintaining the level of healthcare when SAC visits are no longer possible
The results highlight the need to improve access to SACs, as participants felt ataxia management was better overall in SACs compared to non-specialist secondary care settings.
The second part of the project aimed to compare average healthcare resource use and costs per person for those who attended SACs and those who did not in the past 12 months. The experience of 320 people with ataxia within the same cohort (or their parents/ caregivers) across the UK (181), Germany (43) and Italy (96) was collected with the same survey.
Healthcare costs per person were similar in both groups in all three countries. Within countries there was little variation in resource use for the SAC group compared to the non-SAC group, but there were variations between countries in some types of healthcare contact. The highest number of SAC visits occurred in Italy, then Germany and the UK. Physiotherapy visits were the most common type of healthcare contact in all three countries.
Dr Julie Vallortigara, research fellow at the Ataxia centre, who worked on this project:
“We consider this data to be of great importance for the future of people living with ataxia in the UK and other European countries, by providing key insights about people’s experience and feedback about their care, and by making recommendations based on evidence to improve treatment and care”.
Prof Paola Giunti, who led the project, says:
“This study demonstrates the value and benefits of specialist ataxia centres in the management of patients with ataxia”.
Following the project, the researchers set out key healthcare policy recommendations to support ataxia management and care, pictured to the right.
The research papers were published in the Orphanet Journal for Rare Diseases (Orphanet J Rare Dis, 2023; 18: 328 and Orphanet J Rare Dis, 2023; 18: 382). For Information on UK Specialist Ataxia Centres and how to get a referral, visit this page on our website.
