Findings of a Parkinson’s Europe survey looking into accessibility to Deep Brain Stimulation (DBS) for people with the condition in Europe suggest that there is room for improvement.
A survey supported by and developed in partnership with Medtronic collected 1642 responses, of which 1601 were from people in the UK, France, Italy, Germany, Spain and Portugal or elsewhere in Europe. Approximately 14 per cent of the total (229 respondents) had had DBS. Of these, more than 75 per cent were satisfied with their treatment and 85 per cent would recommend it to others.
However, the survey found that more than a third (35 per cent) of respondents who had had the treatment had been on a waiting list for it, while 83 per cent said their referral had taken between one to twelve months.
DBS is usually not considered until four years after a person has been diagnosed. However, according to the survey, more than three quarters of those who had had DBS had it more than seven years after diagnosis, suggesting a delay in referral and/or treatment.
Of the remaining 86 per cent (1413 respondents) who had not had DBS, just over a third (34 per cent or approximately 480 people) of them had discussed using device-aided therapies (DATs) with a healthcare professional – in most cases, a neurologist. These discussions were taking place at least four years after diagnosis, and DBS was the DAT discussed the earliest.
Those who had not had DBS – including those who had talked about it with a healthcare professional – said they were concerned about the possibility of the treatment having side effects, of it being ineffective, the possibility of surgical complications, and not having enough information about it.
Finding out how much people with Parkinson’s know about DBS was another aim of the survey. A question asking if those who had not had DBS would consider it yielded mixed responses, suggesting that people with Parkinson’s may not have enough information about the treatment.
Just over 300 would say yes to having DBS now either with or without hesitation, while around 400 would say yes either with or without hesitation in the future. But a larger proportion (around 450 people) said they would ‘possibly’ consider it in the future and around 300 would ‘possibly’ consider it now. These tentative responses suggest that people either lack sufficient information or have not been spoken to about it by their healthcare professional. Just over 200 people said they would never consider it.
The survey took place from 26 September 2022 to 5 February 2023. Its findings were analysed by researchers overseen by Professor Anette Schrag at the University of London. 89.7 per cent of the respondents were over 55 years old; 50.06 per cent were male, and 49.5 were female, with the remainder preferring to self-describe.
Read the full survey insights on our Our Latest Insights page
Parkinson’s Europe is sharing this article for information purposes only; it does not represent Parkinson’s Europe’s views and is not an endorsement by Parkinson’s Europe of any particular treatments, therapies or products.
