DBS means everything – for some time. Patients
Parkinsonism & Related Disorders
Hariz GM, Limousin P, Hamberg K. DBS means everything – for some time. Patients Parkinsonism & Related Disorders, 2016 Mar 17.
Introduction: Deep brain stimulation (DBS) for Parkinson’s disease (PD) has shown great efficacy in treating motor symptoms of PD. As with other treatments, DBS has known side effects such as speech and gait changes but the treatment likely affects each person with PD (PWP) differently as there are many factors that determine each PWPs outcome. The goal of this study was to take an in-depth look at PWP narratives regarding the quality of life (QoL) in day to day functioning as it may better capture information than the typical less personal self-report inventories commonly used in research studies.
Method: The study took place in Sweden and involved 42 PWP (11 women; mean age 64; PD duration 11.4 years; time since surgery 2.8 years; 43% DBS STN bilateral; 31% Zona Incerta unilateral) who underwent 1.5-2.5 hour open ended interviews regarding QoL with two of the authors of the study. Most of the interviews were completed in the PWP’s home and focused on daily functioning.
Results: Most of the PWP described improvement regarding the impact on their life from DBS (93%) but there were others that did not find benefit (7%). A little over half of the PWP also experienced adverse events after the DBS (speech, gait, balance, and memory). The authors decided to break down the QoL into five separate areas which are discussed below.
1. Reduced tremor. Many of the PWP of this study reported disabling tremors prior to DBS. After DBS they described that they were better able to complete activities of daily living (e.g. eating, dressing, computer usage) due to reduced tremor which resulted in improved QoL. They were able to resume various independent tasks, having to rely less on others, as well as increase their leisure pursuits. PWP also commented that having less visible tremulousness was helpful to increase their social interactions and reduce the insecurity and embarrassment that some felt prior to surgery.
2. Reduce cramps and pain. PWP had reduction in cramps in various body parts which resulted in improved walking and sleep. Expectedly, the reduction in pain was also found to be beneficial to improve QoL.
3. Reduced motor freezing and improved prediction of ability to complete tasks. The PWP experienced significant freezing and stiffness pre DBS that greatly limited the ability to go to events/activities as well as independently complete tasks in the home that they wanted to do. They explained that DBS helped to “widen” their living spaces as they were not as confined to their homes as they were before surgery.
4. Adverse events: Many of the PWP were accepting of the adverse events that they experienced after DBS in exchange for the benefits from the procedure. There were three PWP that described that their adverse events of balance, speech, and memory difficulties greatly impacted their QoL in ways that were worse than they had expected. Notably all three of those PWP also described their symptoms before DBS as “relatively mild.”
5. Disease progression. The PWP interviewed were very open about understanding that their PD would progress and the DBS was only for symptom relief. Various PWP were taking advantage of the improved motor symptoms and time that gave them to complete tasks or travels that they wanted to complete before the disease worsened.
Conclusion: The majority of the PWP reported that their QoL and day to day functioning was improved with DBS but knew that their disease would progress. This study found that the PWP reported tremor was a very disabling symptom prior to DBS which the authors suggest medical professionals may instead describe as a “less problematic symptom.” Having reduction in tremor from DBS directly improved QoL from the PWP’s perspective and should not be ignored. The authors also noted that the PWP had a great understanding that DBS would not cure their disease and instead only treat the symptoms, for a while. This is important to note as the group was appropriately educated about expectations, limitations, risks, and benefits of the procedure. It is so important to insure that PWP are going to facilities that give accurate and thorough information so they can make informed decisions about undergoing such a procedure as DBS. This study also highlights the importance of listening and measuring the PWP’s perspective about DBS as they too are a part of the treatment team and their voice should be heard, especially about their QoL.