Deep Brain Stimulation for Parkinson's Disease: a survey of experiences perceived by recipients and carers

TL;DR

This survey examines the long-term perceived outcomes of deep brain stimulation in Parkinson's disease patients and their carers, highlighting variability in experiences, benefits, and challenges over time.

Contribution

It provides a comprehensive overview of patient and carer perceptions of DBS outcomes, emphasizing the variability and factors influencing perceived effectiveness.

Findings

Most recipients reported good or positive outcomes post-DBS.

Tremor and dyskinesias improved significantly and benefits persisted over time.

Some symptoms, including speech and cognitive functions, worsened after 12 months.

Abstract

Perceived outcomes from DBS for PD were sampled for 52 cases by surveying 46 DBS recipients and 45 carers. Post-DBS experience ranged from 10-129 months. There were significant variations in perceived outcomes over time. In some cases extreme variations were experienced as a consequence of hardware and other problems requiring additional surgery. Nevertheless most in this group went on to ultimately report good outcomes. Holistic assessments of experiences were largely positive, but in some cases there were significant differences in the assessments by recipients and carers. For assessments valid at the time of interview 26 recipients and 17 carers commented that the outcome was good. A second group of 11 recipients and 12 carers reported mixed results but overall a positive experience. A third group of 6 recipients and 8 carers reported negatively about the outcomes. 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. When considering the average of participant responses, tremor and dyskinesias were considered better or much better following DBS, with benefits sustained with time. 12 months after DBS many symptoms were on average considered the same or better after DBS, but for many, some decline in benefits was apparent over this period. Some symptoms were reported to show no improvement, or be worse following DBS. 12 months after the procedure the average of participant responses indicated that symptoms including speech, postural stability, swallowing, handwriting, cognitive function and incontinence were worse.