DBS for Parkinson’s Disease: A study of patient & carer experiences

Perceived Outcomes From DBS For PD –
A Summary.

Over the period 2012-2014 a systematic survey was conducted covering 52 cases of DBS for PD. There were 91 participants – 46 recipients of the DBS procedure and 45 carers. At the time of interview post-DBS experience ranged from 10-129 months.

There were significant variations in perceived outcomes over time. Some experienced extreme variations as a consequence of episodes involving hardware and other problems requiring additional surgery. This was reported in 27% of cases. Nevertheless, most experiencing these episodic difficulties went on to ultimately report good outcomes.

More generally there were often noticeable changes in the outcomes from DBS with time – even within the first 12 months following the procedure, with some symptoms showing sustained improvement and some showing reducing benefits.
Holistic assessments of experiences following DBS for PD were largely positive, but in some cases there were differences in the assessments given by recipients and carers. Assessments varied over time but those valid at the time of interview are shown below. Many considered overall quality of life much better following DBS, more so recipients than carers.

Post-DBS experiences of both motor and non-motor symptoms varied greatly between cases and over time. With all symptoms, some participants reported that they were worse following DBS, but in the great majority of cases symptoms were reported to be the same or better following DBS.

Recipients and carers broadly agreed about the outcomes for many symptoms, but some differences were noticeable. At some periods after DBS, compared to recipients, carers were more likely to be more positive for some symptoms including – facial expression, difficulty walking, slowness or lack of movement, difficulty standing from a chair and freezing, but less positive for symptoms including – sleep quality, fatigue, cognitive function, mood and behaviour, anxiety, vision, depression and quality of life.

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