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PORTLAND, OR—The discovery that a small amount of electricity delivered to the brain could help treat patients with Parkinson’s disease surprised and delighted neuroscientists. Deep brain stimulation (DBS) can “change people’s lives,” which “creates a lot of expectation,” said Michael S. Okun, MD, Adelaide Lackner Professor and Chairman of Neurology at the University of Florida in Gainesville and National Medical Director of the Parkinson’s Foundation. “But let us not be fooled.… There are many shortcomings.” 
Although DBS in its current form may be a powerful treatment for tremor, hyperkinesias, dyskinesias, and motor fluctuations, it is not an effective treatment for gait, freezing, balance, speech, and cognition, he said. As Dr. Okun tells patients, DBS likely will not address problems with “walking, talking, and thinking.”
Various studies indicate that understanding and appropriately managing patients’ expectations regarding DBS therapy is important for achieving optimal outcomes, Dr. Okun said in an overview at the Fourth World Parkinson Congress.
It is important for neurologists to align their expectations with patients’ up front. “What do they have an issue with that is impacting their ability to interface with their world?” he said. Then, the treatment team should tailor the operation to the patient.
Setting Realistic Expectations
Several tools, including the Florida Surgical Questionnaire for Parkinson Disease (FLASQ-PD) and another tool developed by Elena Moro, MD, PhD, Professor of Neurology, Grenoble Alpes University, France, can help identify appropriate candidates for DBS based on patient characteristics. Beyond such instruments, an interdisciplinary team, possibly including a neurologist, psychiatrist, neurosurgeon, and neuropsychologist, should identify a rationale for surgery and choose the best treatment approach. Patients who have contraindications (eg, those who have cognitive impairment or a tremor that does not respond to medication), are over age 70, or need palliation nevertheless may be candidates for DBS, Dr. Okun noted.
Research suggests that interdisciplinary screening may effectively identify patients at risk of poor outcomes. Higuchi et al found that the number and severity of concerns that were raised during interdisciplinary DBS evaluations correlated with unintended hospitalizations and worsened quality of life scores after surgery.
In addition, unrealistic expectations are associated with patients’ subjective outcomes. Maier et al interviewed 30 patients before and three months after surgery and classified patients according to whether their perceived outcome was negative, mixed, or positive. Eight patients with a subjective negative outcome had had unrealistic preoperative expectations, had no postsurgical improvement in quality of life, and had significantly higher presurgical and postsurgical apathy and depression scores. Preoperative apathy and depression predicted the subjective outcomes. Although preoperative apathy and depression are not often measured in clinical practice, “maybe it is something we should be thinking about,” Dr. Okun said.Nisenzon et al surveyed patients to evaluate which treatment outcomes were important to them. Pain, fatigue, emotional distress, walking, posture, and balance were among the domains that had high value to patients. These domains should be addressed with patients when discussing what they can anticipate after DBS surgery, Dr. Okun said.
Medication reduction is another issue that physicians should address with patients when discussing DBS. “A lot of people are expecting DBS to eliminate the need for medications,” which does not happen for 99% of patients, Dr. Okun said.
The National Parkinson Foundation has a free guide to DBS that includes a section detailing what patients can anticipate, he said. Dr. Okun and Pamela R. Zeilman, MSN, ANP-BC, DBS Clinical and Study Coordinator at the Center for Movement Disorders and Neurorestoration, updated the guide in 2014.
Perceptions Shift After Surgery
A study by Hariz et al found that patient perceptions of life shift after stimulation surgery. The investigators interviewed 13 patients who received pallidal DBS. Although certain physical symptoms improved, such as posture and spasms, patients reported that they encountered new challenges after surgery and expressed a need for counseling and support.
Furthermore, expectation may modulate the effect of DBS surgery. In one study, Keitel et al used different scripts to give patients the idea that they were to improve or not improve with various stimulation settings. In a subgroup of patients, tremor decreased or increased by at least 10%, compared with a control condition, when they received the verbal suggestions. Among those who responded to the negative suggestions, semantic verbal fluency also was significantly impaired. “There is an actual potency to the expectations of patients, and it matters how we interact with patients when we are evaluating them both in clinical practice and in the setting of a clinical trial,” Dr. Okun said.
Stimulation Targets and Technology
Multicenter randomized controlled studies of DBS targets have suggested reasons to choose particular stimulation targets over others. For example, stimulation of the subthalamic nucleus (STN) may be better for medication reduction, require fewer battery changes, and have a better economic profile. Meanwhile, stimulation of the globus pallidus internus (GPI) “is an outstanding dyskinesia suppressor … while STN tends to agitate dyskinesia.” GPI devices also may be easier to program.
Pedunculopontine nucleus (PPN) stimulation is a newer technique under investigation that may allow for additional leads to be placed in a patient’s brain. Leads can be implanted on one or both sides of the brain and can be used with GPI or STN leads.
Future DBS devices may enable the remote adjustment of stimulation settings. Nurses and patients also may be able to adjust the devices. DBS increasingly will be tailored to individuals’ symptoms and profiles, and devices may deliver scheduled, responsive, and smart stimulation, Dr. Okun said.
When any new device is introduced to the market, there is “a peak of inflated expectation” about the technology, Dr. Okun said. Then, expectations drop as people discover the device’s limitations. Finally, expectations increase and level as people come to better understand and use the technology. In Parkinson’s disease, neurologists and neurosurgeons are beginning to reach a “plateau of productivity where thousands of people can be helped” by current DBS therapies, he said.
—Jake Remaly
Suggested Reading
Hariz GM, Limousin P, Tisch S, et al. Patients’ perceptions of life shift after deep brain stimulation for primary dystonia--a qualitative study. Mov Disord. 2011;26(11):2101-2106.
Higuchi MA, Martinez-Ramirez D, Morita H, et al. Interdisciplinary Parkinson’s disease deep brain stimulation screening and the relationship to unintended hospitalizations and quality of life. PLoS One. 2016;11(5):e0153785.
Keitel A, Ferrea S, Südmeyer M, et al. Expectation modulates the effect of deep brain stimulation on motor and cognitive function in tremor-dominant Parkinson’s disease. PLoS One. 2013;8(12):e81878.
Maier F, Lewis CJ, Horstkoetter N, et al. Patients’ expectations of deep brain stimulation, and subjective perceived outcome related to clinical measures in Parkinson’s disease: a mixed-method approach. J Neurol Neurosurg Psychiatry. 2013;84(11):1273-1281.
Nisenzon AN, Robinson ME, Bowers D, et al. Measurement of patient-centered outcomes in Parkinson’s disease: what do patients really want from their treatment? Parkinsonism Relat Disord. 2011;17(2):89-94.
PORTLAND, OR—The discovery that a small amount of electricity delivered to the brain could help treat patients with Parkinson’s disease surprised and delighted neuroscientists. Deep brain stimulation (DBS) can “change people’s lives,” which “creates a lot of expectation,” said Michael S. Okun, MD, Adelaide Lackner Professor and Chairman of Neurology at the University of Florida in Gainesville and National Medical Director of the Parkinson’s Foundation. “But let us not be fooled.… There are many shortcomings.”
Although DBS in its current form may be a powerful treatment for tremor, hyperkinesias, dyskinesias, and motor fluctuations, it is not an effective treatment for gait, freezing, balance, speech, and cognition, he said. As Dr. Okun tells patients, DBS likely will not address problems with “walking, talking, and thinking.”
Various studies indicate that understanding and appropriately managing patients’ expectations regarding DBS therapy is important for achieving optimal outcomes, Dr. Okun said in an overview at the Fourth World Parkinson Congress.
It is important for neurologists to align their expectations with patients’ up front. “What do they have an issue with that is impacting their ability to interface with their world?” he said. Then, the treatment team should tailor the operation to the patient.
Setting Realistic Expectations
Several tools, including the Florida Surgical Questionnaire for Parkinson Disease (FLASQ-PD) and another tool developed by Elena Moro, MD, PhD, Professor of Neurology, Grenoble Alpes University, France, can help identify appropriate candidates for DBS based on patient characteristics. Beyond such instruments, an interdisciplinary team, possibly including a neurologist, psychiatrist, neurosurgeon, and neuropsychologist, should identify a rationale for surgery and choose the best treatment approach. Patients who have contraindications (eg, those who have cognitive impairment or a tremor that does not respond to medication), are over age 70, or need palliation nevertheless may be candidates for DBS, Dr. Okun noted.
Research suggests that interdisciplinary screening may effectively identify patients at risk of poor outcomes. Higuchi et al found that the number and severity of concerns that were raised during interdisciplinary DBS evaluations correlated with unintended hospitalizations and worsened quality of life scores after surgery.
In addition, unrealistic expectations are associated with patients’ subjective outcomes. Maier et al interviewed 30 patients before and three months after surgery and classified patients according to whether their perceived outcome was negative, mixed, or positive. Eight patients with a subjective negative outcome had had unrealistic preoperative expectations, had no postsurgical improvement in quality of life, and had significantly higher presurgical and postsurgical apathy and depression scores. Preoperative apathy and depression predicted the subjective outcomes. Although preoperative apathy and depression are not often measured in clinical practice, “maybe it is something we should be thinking about,” Dr. Okun said.Nisenzon et al surveyed patients to evaluate which treatment outcomes were important to them. Pain, fatigue, emotional distress, walking, posture, and balance were among the domains that had high value to patients. These domains should be addressed with patients when discussing what they can anticipate after DBS surgery, Dr. Okun said.
Medication reduction is another issue that physicians should address with patients when discussing DBS. “A lot of people are expecting DBS to eliminate the need for medications,” which does not happen for 99% of patients, Dr. Okun said.
The National Parkinson Foundation has a free guide to DBS that includes a section detailing what patients can anticipate, he said. Dr. Okun and Pamela R. Zeilman, MSN, ANP-BC, DBS Clinical and Study Coordinator at the Center for Movement Disorders and Neurorestoration, updated the guide in 2014.
Perceptions Shift After Surgery
A study by Hariz et al found that patient perceptions of life shift after stimulation surgery. The investigators interviewed 13 patients who received pallidal DBS. Although certain physical symptoms improved, such as posture and spasms, patients reported that they encountered new challenges after surgery and expressed a need for counseling and support.
Furthermore, expectation may modulate the effect of DBS surgery. In one study, Keitel et al used different scripts to give patients the idea that they were to improve or not improve with various stimulation settings. In a subgroup of patients, tremor decreased or increased by at least 10%, compared with a control condition, when they received the verbal suggestions. Among those who responded to the negative suggestions, semantic verbal fluency also was significantly impaired. “There is an actual potency to the expectations of patients, and it matters how we interact with patients when we are evaluating them both in clinical practice and in the setting of a clinical trial,” Dr. Okun said.
Stimulation Targets and Technology
Multicenter randomized controlled studies of DBS targets have suggested reasons to choose particular stimulation targets over others. For example, stimulation of the subthalamic nucleus (STN) may be better for medication reduction, require fewer battery changes, and have a better economic profile. Meanwhile, stimulation of the globus pallidus internus (GPI) “is an outstanding dyskinesia suppressor … while STN tends to agitate dyskinesia.” GPI devices also may be easier to program.
Pedunculopontine nucleus (PPN) stimulation is a newer technique under investigation that may allow for additional leads to be placed in a patient’s brain. Leads can be implanted on one or both sides of the brain and can be used with GPI or STN leads.
Future DBS devices may enable the remote adjustment of stimulation settings. Nurses and patients also may be able to adjust the devices. DBS increasingly will be tailored to individuals’ symptoms and profiles, and devices may deliver scheduled, responsive, and smart stimulation, Dr. Okun said.
When any new device is introduced to the market, there is “a peak of inflated expectation” about the technology, Dr. Okun said. Then, expectations drop as people discover the device’s limitations. Finally, expectations increase and level as people come to better understand and use the technology. In Parkinson’s disease, neurologists and neurosurgeons are beginning to reach a “plateau of productivity where thousands of people can be helped” by current DBS therapies, he said.
—Jake Remaly
Suggested Reading
Hariz GM, Limousin P, Tisch S, et al. Patients’ perceptions of life shift after deep brain stimulation for primary dystonia--a qualitative study. Mov Disord. 2011;26(11):2101-2106.
Higuchi MA, Martinez-Ramirez D, Morita H, et al. Interdisciplinary Parkinson’s disease deep brain stimulation screening and the relationship to unintended hospitalizations and quality of life. PLoS One. 2016;11(5):e0153785.
Keitel A, Ferrea S, Südmeyer M, et al. Expectation modulates the effect of deep brain stimulation on motor and cognitive function in tremor-dominant Parkinson’s disease. PLoS One. 2013;8(12):e81878.
Maier F, Lewis CJ, Horstkoetter N, et al. Patients’ expectations of deep brain stimulation, and subjective perceived outcome related to clinical measures in Parkinson’s disease: a mixed-method approach. J Neurol Neurosurg Psychiatry. 2013;84(11):1273-1281.
Nisenzon AN, Robinson ME, Bowers D, et al. Measurement of patient-centered outcomes in Parkinson’s disease: what do patients really want from their treatment? Parkinsonism Relat Disord. 2011;17(2):89-94.
PORTLAND, OR—The discovery that a small amount of electricity delivered to the brain could help treat patients with Parkinson’s disease surprised and delighted neuroscientists. Deep brain stimulation (DBS) can “change people’s lives,” which “creates a lot of expectation,” said Michael S. Okun, MD, Adelaide Lackner Professor and Chairman of Neurology at the University of Florida in Gainesville and National Medical Director of the Parkinson’s Foundation. “But let us not be fooled.… There are many shortcomings.”
Although DBS in its current form may be a powerful treatment for tremor, hyperkinesias, dyskinesias, and motor fluctuations, it is not an effective treatment for gait, freezing, balance, speech, and cognition, he said. As Dr. Okun tells patients, DBS likely will not address problems with “walking, talking, and thinking.”
Various studies indicate that understanding and appropriately managing patients’ expectations regarding DBS therapy is important for achieving optimal outcomes, Dr. Okun said in an overview at the Fourth World Parkinson Congress.
It is important for neurologists to align their expectations with patients’ up front. “What do they have an issue with that is impacting their ability to interface with their world?” he said. Then, the treatment team should tailor the operation to the patient.
Setting Realistic Expectations
Several tools, including the Florida Surgical Questionnaire for Parkinson Disease (FLASQ-PD) and another tool developed by Elena Moro, MD, PhD, Professor of Neurology, Grenoble Alpes University, France, can help identify appropriate candidates for DBS based on patient characteristics. Beyond such instruments, an interdisciplinary team, possibly including a neurologist, psychiatrist, neurosurgeon, and neuropsychologist, should identify a rationale for surgery and choose the best treatment approach. Patients who have contraindications (eg, those who have cognitive impairment or a tremor that does not respond to medication), are over age 70, or need palliation nevertheless may be candidates for DBS, Dr. Okun noted.
Research suggests that interdisciplinary screening may effectively identify patients at risk of poor outcomes. Higuchi et al found that the number and severity of concerns that were raised during interdisciplinary DBS evaluations correlated with unintended hospitalizations and worsened quality of life scores after surgery.
In addition, unrealistic expectations are associated with patients’ subjective outcomes. Maier et al interviewed 30 patients before and three months after surgery and classified patients according to whether their perceived outcome was negative, mixed, or positive. Eight patients with a subjective negative outcome had had unrealistic preoperative expectations, had no postsurgical improvement in quality of life, and had significantly higher presurgical and postsurgical apathy and depression scores. Preoperative apathy and depression predicted the subjective outcomes. Although preoperative apathy and depression are not often measured in clinical practice, “maybe it is something we should be thinking about,” Dr. Okun said.Nisenzon et al surveyed patients to evaluate which treatment outcomes were important to them. Pain, fatigue, emotional distress, walking, posture, and balance were among the domains that had high value to patients. These domains should be addressed with patients when discussing what they can anticipate after DBS surgery, Dr. Okun said.
Medication reduction is another issue that physicians should address with patients when discussing DBS. “A lot of people are expecting DBS to eliminate the need for medications,” which does not happen for 99% of patients, Dr. Okun said.
The National Parkinson Foundation has a free guide to DBS that includes a section detailing what patients can anticipate, he said. Dr. Okun and Pamela R. Zeilman, MSN, ANP-BC, DBS Clinical and Study Coordinator at the Center for Movement Disorders and Neurorestoration, updated the guide in 2014.
Perceptions Shift After Surgery
A study by Hariz et al found that patient perceptions of life shift after stimulation surgery. The investigators interviewed 13 patients who received pallidal DBS. Although certain physical symptoms improved, such as posture and spasms, patients reported that they encountered new challenges after surgery and expressed a need for counseling and support.
Furthermore, expectation may modulate the effect of DBS surgery. In one study, Keitel et al used different scripts to give patients the idea that they were to improve or not improve with various stimulation settings. In a subgroup of patients, tremor decreased or increased by at least 10%, compared with a control condition, when they received the verbal suggestions. Among those who responded to the negative suggestions, semantic verbal fluency also was significantly impaired. “There is an actual potency to the expectations of patients, and it matters how we interact with patients when we are evaluating them both in clinical practice and in the setting of a clinical trial,” Dr. Okun said.
Stimulation Targets and Technology
Multicenter randomized controlled studies of DBS targets have suggested reasons to choose particular stimulation targets over others. For example, stimulation of the subthalamic nucleus (STN) may be better for medication reduction, require fewer battery changes, and have a better economic profile. Meanwhile, stimulation of the globus pallidus internus (GPI) “is an outstanding dyskinesia suppressor … while STN tends to agitate dyskinesia.” GPI devices also may be easier to program.
Pedunculopontine nucleus (PPN) stimulation is a newer technique under investigation that may allow for additional leads to be placed in a patient’s brain. Leads can be implanted on one or both sides of the brain and can be used with GPI or STN leads.
Future DBS devices may enable the remote adjustment of stimulation settings. Nurses and patients also may be able to adjust the devices. DBS increasingly will be tailored to individuals’ symptoms and profiles, and devices may deliver scheduled, responsive, and smart stimulation, Dr. Okun said.
When any new device is introduced to the market, there is “a peak of inflated expectation” about the technology, Dr. Okun said. Then, expectations drop as people discover the device’s limitations. Finally, expectations increase and level as people come to better understand and use the technology. In Parkinson’s disease, neurologists and neurosurgeons are beginning to reach a “plateau of productivity where thousands of people can be helped” by current DBS therapies, he said.
—Jake Remaly
Suggested Reading
Hariz GM, Limousin P, Tisch S, et al. Patients’ perceptions of life shift after deep brain stimulation for primary dystonia--a qualitative study. Mov Disord. 2011;26(11):2101-2106.
Higuchi MA, Martinez-Ramirez D, Morita H, et al. Interdisciplinary Parkinson’s disease deep brain stimulation screening and the relationship to unintended hospitalizations and quality of life. PLoS One. 2016;11(5):e0153785.
Keitel A, Ferrea S, Südmeyer M, et al. Expectation modulates the effect of deep brain stimulation on motor and cognitive function in tremor-dominant Parkinson’s disease. PLoS One. 2013;8(12):e81878.
Maier F, Lewis CJ, Horstkoetter N, et al. Patients’ expectations of deep brain stimulation, and subjective perceived outcome related to clinical measures in Parkinson’s disease: a mixed-method approach. J Neurol Neurosurg Psychiatry. 2013;84(11):1273-1281.
Nisenzon AN, Robinson ME, Bowers D, et al. Measurement of patient-centered outcomes in Parkinson’s disease: what do patients really want from their treatment? Parkinsonism Relat Disord. 2011;17(2):89-94.
