DBS means everything – for some time. Patients’ Perspectives on Daily Life with Deep Brain Stimulation for Parkinson’s Disease
Journal of Parkinson’s Disease
Hariz GM, Limousin P, Hamberg K.J DBS means everything – for some time. Patients’ Perspectives on Daily Life with Deep Brain Stimulation for Parkinson’s Disease Journal of Parkinson’s Disease, 2016 Mar 17;6(2):335-47. doi: 10.3233/JPD-160799
Introduction: Parkinson’s disease (PD) is a common neurological condition that has motor symptoms, nonmotor symptoms, and greatly impacts of quality of life (QoL) of individuals with PD. There is great heterogeneity of how long each person will have PD as well as what specific symptoms he or she has. Medication frequently alleviates symptoms early in the disease but as it progresses medication efficacy wanes and some individuals undergo deep brain stimulation (DBS). Frequently individuals have positive motoric outcomes after DBS but there can be some nonmotor symptoms that affect one’s QoL which varies greatly based on many factors. The authors of this study discuss that attempting to quantify QoL after DBS by using standardized measures (e.g. UPDRS and PDQ39) likely minimizes the actual challenges that individuals experience due to the great heterogeneity of symptoms and feelings of each individual with PD. Therefore, they used a qualitative narrative approach to looking at patients’ perspectives about QoL after DBS for PD.
Method: Forty-Two Swedish individuals (11 women) with PD were interviewed (1-2 hours; home, hospital, phone) after undergoing DBS for PD (range was 6 months to 8 years post-surgery). The interviewers were not a part of the treatment teams from any of the surgery sites which may have allowed the people with PD (PWP) to openly and honestly discuss their opinions. Open ended questions were used to try and understand how DBS affected them in their day to day lives. Sample questions are available in the article.
Results: Mean age of diagnosis was 52 and most had PD for about 11 years (range was 2-30 years). The mean age at the time of the DBS surgery was 61, most were in a relationship and at least high school educated. Most surgical targets were bilateral STN or unilateral Zi.
The authors looked at many details as well as themes from the interviews and found that tremor was the most common symptom and most troublesome before surgery. Other motor symptoms proved problematic as well (“slowness, stiffness, cramps, and dyskinesias”). Nonmotor symptoms were also reported including gait and balance issues, pain, speech problems, sleep issues, fatigue, stress intolerance, and swallowing challenges. About two thirds of the PWP thought that they experienced a “marked improvement” since the DBS while another 32% thought there was a “moderate to small” impact. A small percentage (7.5) thought they had a small to marked deterioration. About half of the PWP experienced adverse side effects after DBS (e.g. speech, gait and balance, memory). A little under half reported no adverse events at all.
Many of the PWP accepted the adverse side effects as they knew such was possible in exchange for improvement in their motor control and reduction in disabling tremors and cramps. There were multiple quotes from the PWP such as their ability to complete ADLs and participate in the daily lives greatly improved after DBS. Individuals reported being more social and less isolated due to reduced tremors. Multiple comments were made that DBS greatly improved QoL. The authors also evaluated three individuals that thought the side effects were worse as compared to the gain in motor symptoms. Interestingly each of the individuals described that their preoperative symptoms were mild as compared to the other group that found their symptoms very prominently.
The PWP interviewed were also very clear that they knew their PD would progress regardless of DBS. Many were of the impression that the DBS gave them a bit more time of being functional but that they would get worse and continue to need the PD medications.
Conclusion: Most interviewees were happy with the outcomes of their DBS as it related to impacting their daily lives. Many pointed to tremor as being very disabling even if it is not considered so in the medical community. DBS gave them less tremors, more freedom to move, participate in tasks as they used to, and that the results were temporary as their disease would progress. The narrative and qualitative approach to this article is a good one and that it truly listens to each individual and provided a richness in comments as well as individual specific concerns. The article provides many quotes and comments from the interviewees and is well worth a read for that reason alone!