Ataxia UK has worked closely with researches at the London Ataxia Centre and other experts on a research study assessing the impact of specialist ataxia centres (SACs) 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 so far has involved gathering feedback from people with ataxias or their carers on the impact of using SACs, compared with using standard neurological clinics, looking at treatment and care, costs, and healthcare resource use. SACs are places where people can see a clinical team of experts in ataxia, discuss their symptoms and their needs, receive medical advice and specific interventions to manage their conditions. Feedback has been collected from people with ataxias in the UK, Germany and Italy.
Recently, a new paper was published sharing the results of the third part of the VoT project, focusing on Germany only.
The study involved distributing a survey to people with ataxia in Germany to gather information about diagnosis and management of the ataxias, utilisation of health care services, and patients’ satisfaction in both SAC and non-specialist settings. The researchers compared average resource use and health service costs per patient, stratifying by whether patients attended a SAC or not.
The researchers collected and analysed responses from 101 participants in total. For participants who visited both a SAC and a standard neurology clinic, 67.2 % reported that the care received at a SAC was better. You can see the feedback on SAC services in the infographic below:
Costs were not significantly different between those attending a SAC and those who did not. However, the average cost per patient per year found in SACs was higher compared with non-SACs. The average total cost per patient over a one-year period was 2091 Euros for non-SAC patients and 4043 Euros for SAC patients. A number of barriers to accessing SACs were listed, including the lack of clear referral pathway and the travel required to such centres.
A number of recommendations were made to address the gaps identified in the care provided based on people’s experience of feedback. The most common recommendations based on people’s feedback were 1) better practical advice on living with my condition, 2) more help so I can feel in control of my disease and cope better, 3) more information about my condition, 4) better management of my symptoms, 5) better access to therapies (physiotherapy, speech therapy, occupational therapy), 6) more information on help adapting my home, and 7) continuing the same level of care in my home if I am no longer able to visit a SAC, 8) knowing my specific diagnosis earlier.
Read the full paper here.
Read the results from the second part of the VoT project here.