Amanda R Merner1,2, Thomas Frazier3, Paul J Ford2,4,5, Scott E Cooper6, Andre Machado2,4, Brittany Lapin7,8, Jerrold Vitek6, Cynthia S Kubu2,4,5. 1. Department of Psychological Sciences, Case Western Reserve University, Cleveland, OH, United States. 2. Department of Neurology, Cleveland Clinic, Cleveland, OH, United States. 3. Department of Psychology, John Carroll University, University Heights, OH, United States. 4. Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, Cleveland, OH, United States. 5. Neuroethics Program, Cleveland Clinic, Cleveland, OH, United States. 6. Department of Neurology, University of Minnesota, Minneapolis, MN, United States. 7. Department of Quantitative Health Sciences, Lerner Research Institute, Cleveland Clinic, Cleveland, OH, United States. 8. Center for Outcomes Research and Evaluation, Neurological Institute, Cleveland Clinic, Cleveland, OH, United States.
Abstract
Objective: To examine changes in patients' desired control of the deep brain stimulator (DBS) and perception of global life control throughout DBS. Methods: A consecutive cohort of 52 patients with Parkinson's disease (PD) was recruited to participate in a prospective longitudinal study over three assessment points (pre-surgery, post-surgery months 3 and 6). Semi-structured interviews assessing participants' desire for stimulation control and perception of global control were conducted at all three points. Qualitative data were coded using content analysis. Visual analog scales were embedded in the interviews to quantify participants' perceptions of control over time. Results: Participants reported significant increases in their perception of global control over time and significant declines in their desired control of the stimulation. These changes were unrelated to improvements in motor symptoms. Improvements in global control were negatively correlated with a decline in desired stimulation control. Qualitative data indicate that participants have changed, nuanced levels of desired control over their stimulators. Increased global life control following DBS may be attributed to increased control over PD symptoms, increased ability to engage in valued activities, and increased overall self-regulation, while other domains related to global control remained unaffected by DBS. Conclusions: There are few empirical data documenting patients' desire for stimulation control throughout neuromodulation and how stimulation control is related to other aspects of control despite the growing application of neuromodulation devices to treat a variety of disorders. Our data highlight distinctions in different types of control and have implications for the development of patient-controlled neurostimulation devices.
Objective: To examine changes in patients' desired control of the deep brain stimulator (DBS) and perception of global life control throughout DBS. Methods: A consecutive cohort of 52 patients with Parkinson's disease (PD) was recruited to participate in a prospective longitudinal study over three assessment points (pre-surgery, post-surgery months 3 and 6). Semi-structured interviews assessing participants' desire for stimulation control and perception of global control were conducted at all three points. Qualitative data were coded using content analysis. Visual analog scales were embedded in the interviews to quantify participants' perceptions of control over time. Results:Participants reported significant increases in their perception of global control over time and significant declines in their desired control of the stimulation. These changes were unrelated to improvements in motor symptoms. Improvements in global control were negatively correlated with a decline in desired stimulation control. Qualitative data indicate that participants have changed, nuanced levels of desired control over their stimulators. Increased global life control following DBS may be attributed to increased control over PD symptoms, increased ability to engage in valued activities, and increased overall self-regulation, while other domains related to global control remained unaffected by DBS. Conclusions: There are few empirical data documenting patients' desire for stimulation control throughout neuromodulation and how stimulation control is related to other aspects of control despite the growing application of neuromodulation devices to treat a variety of disorders. Our data highlight distinctions in different types of control and have implications for the development of patient-controlled neurostimulation devices.
Authors: Günther Deuschl; Jan Herzog; Galit Kleiner-Fisman; Cynthia Kubu; Andres M Lozano; Kelly E Lyons; Maria C Rodriguez-Oroz; Filippo Tamma; Alexander I Tröster; Jerrold L Vitek; Jens Volkmann; Valerie Voon Journal: Mov Disord Date: 2006-06 Impact factor: 10.338
Authors: Domenic Cicchetti; Richard Bronen; Susan Spencer; Sheryl Haut; Anne Berg; Patricia Oliver; Peter Tyrer Journal: J Nerv Ment Dis Date: 2006-08 Impact factor: 2.254
Authors: Cynthia S Kubu; Scott E Cooper; Andre Machado; Thomas Frazier; Jerrold Vitek; Paul J Ford Journal: Neurology Date: 2016-12-02 Impact factor: 9.910