Search

Objective: The Cognitive Change Index (CCI-20) is a validated questionnaire that assesses subjective cognitive complaints (SCCs) across memory, language, and executive domains. We aimed to: (a) examine the internal consistency and construct validity of the CCI-20 in patients with movement disorders and (b) learn how the CCI-20 corresponds to objective neuropsychological and mood performance in individuals with Parkinson's disease (PD) or essential tremor (ET) seeking deep brain stimulation (DBS)., Methods: 216 participants ( N = 149 PD; N = 67 ET) underwent neuropsychological evaluation and received the CCI-20. The proposed domains of the CCI-20 were examined via confirmatory (CFA) and exploratory (EFA) factor analyses. Hierarchical regressions were used to assess the relationship among subjective cognitive complaints, neuropsychological performance and mood symptoms., Results: PD and ET groups were similar across neuropsychological, mood, and CCI-20 scores and were combined into one group who was well educated ( m = 15.01 ± 2.92), in their mid-60's ( m = 67.72 ± 9.33), predominantly male (63%), and non-Hispanic White (93.6%). Previously proposed 3-domain CCI-20 model failed to achieve adequate fit. Subsequent EFA revealed two CCI-20 factors: memory and non-memory ( p < 0.001; CFI = 0.924). Regressions indicated apathy and depressive symptoms were associated with greater memory and total cognitive complaints, while poor executive function and anxiety were associated with more non-memory complaints., Conclusion: Two distinct dimensions were identified in the CCI-20: memory and non-memory complaints. Non-memory complaints were indicative of worse executive function, consistent with PD and ET cognitive profiles. Mood significantly contributed to all CCI-20 dimensions. Future studies should explore the utility of SCCs in predicting cognitive decline in these populations.

Introduction: The success of deep brain stimulation (DBS) treatment depends on several factors, including proper patient selection, accurate electrode placement, and adequate stimulation settings. Another factor that may impact long-term satisfaction and therapy outcomes is the type of implantable pulse generator (IPG) used: rechargeable or non-rechargeable. However, there are currently no guidelines on the choice of IPG type. The present study investigates the current practices, opinions, and factors DBS clinicians consider when choosing an IPG for their patients., Methods: Between December 2021 and June 2022, we sent a structured questionnaire with 42 questions to DBS experts of two international, functional neurosurgery societies. The questionnaire included a rating scale where participants could rate the factors influencing their choice of IPG type and their satisfaction with certain IPG aspects. Additionally, we presented four clinical case scenarios to assess preference of choice of IPG-type in each case., Results: Eighty-seven participants from 30 different countries completed the questionnaire. The three most relevant factors for IPG choice were "existing social support," "cognitive status," and "patient age." Most participants believed that patients valued avoiding repetitive replacement surgeries more than the burden of regularly recharging the IPG. Participants reported that they implanted the same amount of rechargeable as non-rechargeable IPGs for primary DBS insertions and 20% converted non-rechargeable to rechargeable IPGs during IPG replacements. Most participants estimated that rechargeable was the more cost-effective option., Conclusion: This present study shows that the decision-making of the choice of IPG is very individualized. We identified the key factors influencing the physician's choice of IPG. Compared to patient-centric studies, clinicians may value different aspects. Therefore, clinicians should rely not only on their opinion but also counsel patients on different types of IPGs and consider the patient's preferences. Uniform global guidelines on IPG choice may not represent regional or national differences in the healthcare systems., (© 2023 S. Karger AG, Basel.)

Aims: This follow-up study aimed to examine the 8-year efficacy and safety of subthalamic nucleus (STN) deep brain stimulation (DBS) for patients with Parkinson's disease (PD) in southern China., Methods: The follow-up data of 10 patients with PD undergoing STN-DBS were analyzed. Motor symptoms were assessed before and 1, 3, 5, and 8 years after the surgery with stimulation-on in both off-medication (off-med) and on-medication (on-med) status using the Unified Parkinson's disease Rating Scale Part III. The quality of life was assessed using the 39-item Parkinson's Disease Questionnaire. The sleep, cognition, and emotion were evaluated using a series of nonmotor scales. Levodopa equivalent daily dose (LEDD) and stimulation parameters were recorded at each follow-up., Results: The motor symptoms were improved by 50.9%, 37.7%, 36.7%, and 37.3% in 1, 3, 5, and 8 years, respectively, in the off-med / stimulation-on status compared with the baseline. The quality of life improved by 39.7% and 56.1% in 1 and 3 years, respectively, but declined to the preoperative level thereafter. The sleep, cognition, and emotion were mostly unchanged. LEDD reduced from 708.1 ± 172.5 mg to 330 ± 207.8 mg in 8 years. The stimulation parameters, including amplitude, pulse width, and frequency, were 2.77 ± 0.49 V, 71.3 ± 12.8 μs, and 121.5 ± 21 Hz, respectively, in 8 years., Conclusion: Long-term therapeutic efficacy of STN-DBS could be achieved even with relatively low stimulation intensity and medication dosage for PD patients in southern China. Motor improvement and medication reduction were maintained through the 8-year follow-up, but improvement in quality of life lasted for only 3 years. No definite changes was found in nonmotor symptoms after STN-DBS., (© 2021 The Authors. CNS Neuroscience & Therapeutics published by John Wiley & Sons Ltd.)

Standard treatment of Parkinson's disease involves the dopaminergic medications. Deep brain stimulation of the subthalamic nucleus (STN-DBS) is an important neurosurgical intervention often used as alternative treatment to drug therapy; however, it can be associated with increase of impulsive behaviors. This descriptive review focused on studies investigating the correlation between Deep brain stimulation of the subthalamic nucleus and impulsivity in Parkinson's disease patients, arguing, the action's mechanism and the specific role of the subthalamic nucleus. We searched on PubMed and Web of Science databases and screening references of included studies and review articles for additional citations. From initial 106 studies, only 15 met the search criteria. Parkinson's Disease patients with and without Deep Brain Stimulation were compared with healthy controls, through 16 different tasks that assessed some aspects of impulsivity. Both Deep brain stimulation of the subthalamic nucleus and medication were associated with impulsive behavior and influenced decision-making processes. Moreover, findings demonstrated that: Impulse Control Disorders (ICDs) occurred soon after surgery, while, in pharmacological treatment, they appeared mainly after the initiation of treatment or the increase in dosage, especially with dopamine agonists. The subthalamic nucleus plays a part in the fronto-striato-thalamic-cortical loops mediating motor, cognitive, and emotional functions: this could explain the role of the Deep Brain Stimulation in behavior modulation in Parkinson's Disease patients. Indeed, increase impulsivity has been reported also after deep brain stimulation of the subthalamic nucleus independently by dopaminergic medication status., (© 2021. The Author(s).)

Background: Bilateral subthalamic nucleus deep brain stimulation improves motor symptoms and treatment-related complications in patients with Parkinson's disease. However, some patients have trouble adjusting socially after successful neurosurgery, in part because of "unrealistic" expectations and psychiatric disorders. Preoperative psychological interventions focusing on these aspects could be beneficial for such patients., Methods: We compared the outcomes of 2 psychosocial approaches-1 based on cognitive restructuration and 1 consisting of 2 interviews-with those of a control group without preoperative preparation. All patients underwent a psychometric evaluation 2 months before surgery (M-2) and again at 3 (M+3) and 6 months (M+6) after surgery. The psychometric evaluation focused on social adjustment using the social adjustment scale-self-report. The psychiatric profile of the patients was also assessed., Results: Of 73 patients initially enrolled, 62 performed the initial inclusion visit (M-2) and the 2 postoperative visits (M+3, M+6). For these 62 patients (52% male), the overall mean age was 59 ± 6.13 years, and the mean disease duration was 9.44 ± 3.62 years. No specific differences were observed for social adjustment between the groups or visits (M-2, M+3, M+6); however, an interaction was found in the cognitive restructuration group at M+6 for the family dimension of the social adjustment scale-self-report., Conclusion: Our results suggest that even if no overall increase in the social adjustment score was observed, patients with Parkinson's disease eligible for neurosurgery should undergo preoperative psychosocial therapy to define their expectations and help them in their psychological restructuration. This type of therapy, complementary to psychoeducation, could represent an opportunity to prevent postoperative deception and social maladjustment., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: The aim of this study was to evaluate the feasibility and preliminary efficacy and safety of combined bilateral ventralis oralis posterior/ventralis intermedius (Vop/Vim) deep brain stimulation (DBS) for the treatment of acquired dystonia in children and young adults. Pallidal DBS is efficacious for severe, medication-refractory isolated dystonia, providing 50%-60% long-term improvement. Unfortunately, pallidal stimulation response rates in acquired dystonia are modest and unpredictable, with frequent nonresponders. Acquired dystonia, most commonly caused by cerebral palsy, is more common than isolated dystonia in pediatric populations and is more recalcitrant to standard treatments. Given the limitations of pallidal DBS in acquired dystonia, there is a need to explore alternative brain targets. Preliminary evidence has suggested that thalamic stimulation may be efficacious for acquired dystonia., Methods: Four participants, 3 with perinatal brain injuries and 1 with postencephalitic symptomatic dystonia, underwent bilateral Vop/Vim DBS and bimonthly evaluations for 12 months. The primary efficacy outcome was the change in Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) and Barry-Albright Dystonia Scale (BADS) scores between the baseline and 12-month assessments. Video documentation was used for blinded ratings. Secondary outcomes included evaluation of spasticity (Modified Ashworth Scale score), quality of life (Pediatric Quality of Life Inventory [PedsQL] and modified Unified Parkinson's Disease Rating Scale Part II [UPDRS-II] scores), and neuropsychological assessments. Adverse events were monitored for safety., Results: All participants tolerated the procedure well, and there were no safety concerns or serious adverse events. There was an average improvement of 21.5% in the BFMDRS motor subscale score, but the improvement was only 1.6% according to the BADS score. Following blinded video review, dystonia severity ratings were even more modest. Secondary outcomes, however, were more encouraging, with the BFMDRS disability subscale score improving by 15.7%, the PedsQL total score by 27%, and the modified UPDRS-II score by 19.3%. Neuropsychological assessment findings were unchanged 1 year after surgery., Conclusions: Bilateral thalamic neuromodulation by DBS for severe, medication-refractory acquired dystonia was well tolerated. Primary and secondary outcomes showed highly variable treatment effect sizes comparable to those of pallidal stimulation in this population. As previously described, improvements in quality of life and disability were not reflected in dystonia severity scales, suggesting a need for the development of scales specifically for acquired dystonia.Clinical trial registration no.: NCT03078816 (clinicaltrials.gov).

Assessing patient goals is crucial in understanding patient centered outcomes and satisfaction. However, patient goals may change throughout treatment. Our objective is to identify the changes in patient-selected goals of Parkinson's disease (PD) patients undergoing bilateral subthalamic nucleus deep brain stimulation (STN-DBS) and examine the relationship among patient-selected goal achievement, standard DBS outcome measures, and overall patient satisfaction. Seventy-five patients undergoing bilateral STN-DBS listed three patient-selected goals before surgery. After six months, patients were asked to restate the three goals and to rate the degree of goal achievement and the overall satisfaction of surgery. The three most frequently selected goals were "dyskinesia", "gait disorder", and "medication off duration". After six months, 80.0% of patients could not accurately recall their pre-DBS goals. "Dyskinesia" was the most consistently selected goal, more patients selected "tremor" and "less medication" at post-DBS compared to pre-DBS, and less patients selected "gait disorder" at post-DBS compared to pre-DBS. 74.7% of patients reported overall satisfaction by stating they were "very much" or "much better after surgery". Patient satisfaction significantly correlated with goal achievement (r = 0.640; p < 0.001). Interestingly, change in UPDRS motor scores did not correlate with patient satisfaction (r = 0.100; p = 0.395). Although recalled goals do not accurately represent the pre-surgical goals, the achievement score for recalled goals significantly correlated with patient satisfaction. Patient goals change due to many reasons. Therefore, follow-up patient counseling to discuss goals and outcomes is important in improving patient satisfaction after STN-DBS., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Objective: High-frequency deep brain stimulation (DBS) of anterior thalamic nuclei (ANT) reduces the frequency and intensity of focal and focal to bilateral tonic-clonic epileptic seizures. We investigated the impact of high-frequency ANT-DBS on vigilance in epilepsy patients during relaxed and drowsy wakefulness, to better understand the effects and the mechanisms of action of this intervention in humans., Methods: Four patients with different structural epileptic pathologies were included in this retrospective case-cohort study. Short- and long-term electroencephalography (EEG) was used to determine states of relaxed or drowsy wakefulness and the vigilance changes during stimulation-on and stimulation-off intervals., Results: In relaxed, wakeful patients with eyes closed, the eyelid artifact rate increased acutely and reproducibly during stimulation-on intervals, suggesting an enhanced vigilance. This effect was accompanied by a slight acceleration of the alpha rhythm. In drowsy patients with eyes closed, stimulation generated acutely and reproducibly alpha rhythms, similar to the paradoxical alpha activation during eyes opening. The occurrence of the alpha rhythms reflected an increase in the vigilance of the drowsy subjects during ANT-DBS., Significance: This is the first demonstration that ANT-DBS increases the vigilance of wakeful epilepsy patients. Our results deliver circumstantial evidence that high-frequency ANT-DBS activates thalamocortical connections that promote wakefulness., (© 2020 International League Against Epilepsy.)

Background: Deep Brain Stimulation (DBS) is increasingly used in pediatric patients affected by isolated dystonia, with excellent results. Despite well documented long-term effects on motor functioning, information on quality of life and social adaptation is almost lacking., Objectives: The present study aims to explore the experience of illness and the relation with the device in adult patients suffering from dystonia who underwent DBS surgery in pediatric age., Methods: A narrative inquiry approach was used to collect patients' narratives of their experience with dystonia and DBS stimulator. A written interview was administered to 8 patients over 18 years old with generalized isolated dystonia who had undergone pallidal DBS implantation in childhood. A thematic analysis was realized to examine the narratives collected., Results: Five main themes emerged: "relationship with the disease", "experience related to DBS procedure", "relationship with one's own body", "fears", "thoughts about future". Despite a general satisfaction in relation to DBS intervention, some patients expressed difficulties, such as the acceptance of changes in one's own body, concerns and fears regarding the device and the future, also considering the critical phase of transition from childhood to adulthood., Conclusions: These results suggest that further research is needed to understand the contribution of psychological, as much as medical, aspects to the overall outcome of the intervention. The present explorative study encourages a deeper investigations of psychological aspects of patients, in order to plan a tailored care path and to decide whether to suggest a psychological support, both before and after the intervention., Competing Interests: Declaration of competing interest The authors declare no conflict of interest concerning the research related to the manuscript., (Copyright © 2020 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.)

Objectives: Deep brain stimulation (DBS) is a safe and effective alternative treatment of some movement disorders such as Parkinson's disease. Although DBS is an effective treatment for Parkinson's disease, because of the necessity of surgical intervention, follow-up and the effects on symptoms, this study was carried out to determine the challenges, expectations and accomplishments of patients with DBS in Parkinson's disease., Materials and Methods: This qualitative study was carried out at the Neurosurgery Department of a research hospital in Turkey with seven patients who underwent DBS between 2008 and 2018. In the study, the challenges, expectations, and accomplishments of patients were investigated by using three focus group interviews in October 2018., Results: Among the participants, six patients were male, and one patient was female. The mean age of the patients was 56.85±16.48. Three main themes were revealed in the study. These were (1) Reborn; decrease in dependence, sense of accomplishment, enjoyment of life, (2) Prejudice; perceived as severely ill by others and (3) Fear; not being accustomed to the device, loss of device function., Conclusion: The results obtained from this study can be used in the process of adaptation to this process by discussing and evaluating the challenges, expectations and accomplishments of the Parkinson's patient in DBS with healthcare professionals and other patients., (Copyright © 2020 by Academy of Sciences and Arts of Bosnia and Herzegovina.)

Background and Purpose: Subthalamic deep brain stimulation (STN DBS) is an effective therapy against medication-refractory motor complications in patients with Parkinson's disease. However, it remains difficult to predict which baseline patient characteristics are associated with quality of life (QoL) after surgery. The objective was to identify preoperative factors associated with QoL after STN DBS by systematically reviewing publications of sufficient methodological quality., Methods: Main databases were systematically searched up to March 2019 to identify studies that investigated factors associated with QoL after STN DBS in patients with idiopathic Parkinson's disease., Results: In all, 869 studies were identified, of which 18 fulfilled the inclusion criteria. Higher QoL after DBS appears to be associated with a large preoperative difference between ON and OFF motor function in some studies, although there was no clear association of severity of motor function or motor complications with postoperative QoL. Lower severity of dyskinesias was associated with greater postoperative QoL improvement but has been insufficiently studied. Higher baseline QoL was suggestive of higher postoperative QoL. Four studies suggested that older age at surgery is associated with a lower improvement, although six other studies reported no association. No or limited evidence was found for cognitive impairment or psychiatric dysfunction., Conclusion: Various relative contraindications for STN DBS such as cognitive impairment and psychiatric dysfunction appear to be unrelated to postoperative QoL. However, the lack of clear correlations with disease-related variables suggests that QoL may be individually influenced by other factors, indicating that an ideal preoperative patient profile with regard to QoL improvement cannot be readily provided., (© 2019 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)

When oral dopaminergic medication falls short in the treatment of Parkinson's disease, patients are left with motor response fluctuations and dyskinesias that may have a large impact on functioning in daily life. They may benefit from one of the currently available advanced treatments, namely deep brain stimulation, continuous levodopa-carbidopa intestinal gel, and continuous subcutaneous apomorphine infusion. The indication, choice between the separate advanced treatments and the timing can be challenging and will be discussed against the background of the progressive nature of the disease, the heterogeneity of disease manifestation and variable patient characteristics.

Introduction: Deep brain stimulation (DBS) is an established treatment for movement disorders. We have previously shown that in our practice, the majority of adult patients prefer fixed-life implantable pulse generators (IPGs), although rechargeable batteries are increasingly used. The aim of this study was to evaluate patients' long-term satisfaction with their choice of battery and factors that influence their decision., Methods: Thirty patients with DBS were given a questionnaire to assess long-term satisfaction and experience with the type of battery they had chosen., Results: Twenty-six patients completed the survey. The mean age was 67.7 ± 7.3 years, and mean follow-up was 18.0 ± 7.2 months. The indications for DBS were Parkinson's disease (76.9%), tremor (11.5%) and dystonia (11.5%). Eleven patients (42.5%) had chosen the rechargeable battery. All patients were still happy with their choices and would not change the type of battery if they had the chance to do so. However, in patients who chose the fixed-life battery, concern about the size of battery rose from 6.7% pre-operatively to 60% on long-term post-operative follow-up. In patients who chose the rechargeable battery, concern about the need to recharge the battery did not change, remaining low postoperatively. Interestingly, even though the main reason cited for choosing the fixed-life battery was the convenience and concern about forgetting to recharge the battery, patients who had chosen a rechargeable IPG did not experience this problem., Conclusion: Patients and caregivers should be involved in the choice of battery, as each type of IPG has its own advantages and disadvantages. Long-term evaluation of patient's experience and satisfaction with battery of choice revealed that size of the IPG, need for further replacement surgeries and need for recharging remain matters of major concern. Although preoperatively often underestimated, the size of the battery seems to be an important factor in long-term satisfaction., (© 2020 S. Karger AG, Basel.)

Patients with Parkinson's disease (PD) may benefit from deep brain stimulation (DBS) to improve motor and medication-induced symptoms. Yet mixed evidence regarding the outcome of successful DBS on couple satisfaction has been highlighted in the literature. Thirty patients diagnosed with PD were included in a study investigating couple satisfaction (MSS-14), depression (HAD-D) and anxiety (HAD-A) at four measurement times: before DBS and 6, 12, and 18 months post-surgically. Sixteen spouses/partners were included as well. Couple satisfaction from the patient perspective was never associated with depression or anxiety. However, poor marital adjustment (i.e., difference and absolute difference between patients and spouses/partners MSS-14 scores) predicted patients' pre-operative depressive mood. Longitudinal analyses showed that couple satisfaction (n = 9) worsened at 12 months and 18 months compared to pre-DBS scores, F(2.047, 16.378) = 8.723, p = .003, and despite concomitant motor improvement. Growth curve analyses showed that couple satisfaction worsening occurred between 6 and 12 months post-operatively (b = 2.938, p < .001). Thus, couple satisfaction did not increase along with motor improvement and deteriorated after the adjustment period following DBS.

Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson's disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the 'psychosocial' impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need to be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS 'in the field' present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies (STS), we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service.

This contribution aims at describing the experiences of Deep Brain Stimulation (DBS) as discussed on Internet forums. Since the 2000s, increasing attention has been paid to health practices associated with the use of the Internet, whether by medical professionals, public authorities or researchers in the social sciences. We know that Internet is used by patients with Parkinson's disease, in order to discuss about their lived experiences. This contribution will present how these Internet users address the specific theme of DBS. We will examine how their use and the information sharing associated to it participate in the "shaping" of the lived experience of deep cerebral stimulation. This contribution will be introduced by an analysis of the state-of-the-art in sociological and anthropological international research on the topic of "Internet health". On the basis of this analysis, it will propose a framework to describe and understand the various uses of the web that are made to give an account of the experience of stimulation. The existence of collective mobilizations in Parkinson's disease, an old Internet experience and media oppositions concerning certain antiparkinsonian drugs, are conditions which push us to question these themes concerning DBS. This paper is a description, for the first time, of roles played by the users of these Internet forums and the different online activities produced about DBS subject. In an ethnographic perspective, we had to imagine that we were an Internet user seeking patient experiences with this surgical procedure to understand these interactions about DBS. The main goal of this contribution is to describe the attention paid by users for medical information about DBS in the identity and self-help process. The interest of such an approach is to open an anthropological reflection on the place and the role of the medical representations in the testimonies of experience of the disease or the treatments.

This contribution intends to explore patients' lived experience, with a focus on the temporal dimension. On the basis of a qualitative study that led me to interview persons with Parkinson's disease (PD), caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deep brain stimulation (DBS) in Greece. I raise the issue of access to DBS medical care, and show how distinct temporalities are implied when the patients face such a matter: that of linear time, linked with the medical discourse, the bureaucratic time linked to administrative and financial hurdles in the implementation and maintenance of DBS, and the technological time of the body/technology fusion. I consider initially the impact of technology and health care settings on the lived experience of patients and the enactment of multiple bodies which are interrelated with the social world. I then expand my analysis in order to show that this experience cannot be a solipsistic one, or specific to one physician/patient relationship. It is fully socially shaped.

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient's experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and mutually exclusive regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient's lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation.

This editorial presents a special issue gathering four contributions about the patient's lived experience in the context of deep-brain stimulation. It aims at clarifying the meaning of such an experience and its scope for medical practice, the health system and its legal frame.

Deep Brain Stimulation (DBS) is an effective intervention for Parkinson's disease if drug therapy with dopaminergic medication has become insufficient. Current post-operative care focuses on optimizing the neurostimulator in combination with medication. We believe that the success rate of DBS surgery can be enhanced if more attention is paid to the (psychosocial) adjustment problems of patients and their families. Finding a new balance after surgery, in the relationship, family and work, is not easy and can be complicated by postoperative non-motor changes. Care for psychosocial adjustment may improve the quality of life and as such increase the overall outcome after surgery. We present two cases to illustrate these psychosocial adjustment problems. One case describes the impact of stimulation-related behavioural changes on relationships, while the other case describes difficulties in resuming work despite successful surgery. Psychosocial support appeared helpful for both cases to find their new balance in life.

Background: Deep brain stimulation (DBS) is increasingly used to treat a wide variety of neurological and psychiatric disorders. Implantable pulse generators (implantable pulse generators/batteries) for DBS were originally only available as a nonrechargeable option. However, there is now a choice between fixed-life and rechargeable batteries, with each having their own advantages and disadvantages. The extent of patient involvement in the choice of battery and the factors that matter to them have not been well studied., Methods: Thirty consecutive adult patients with movement disorders attending a pre-DBS clinic were offered a choice of fixed-life or rechargeable battery and completed a questionnaire after the consultation on which factors influenced their decision., Results: Nineteen patients (63%) chose the fixed-life battery and 11 patients (37%) chose the rechargeable battery. There were no significant differences in age, sex, underlying disease, disease duration or Unified Parkinson's Disease Rating Scale (UPDRS) (part 3) score (for patients with Parkinson disease) between those who chose the fixed-life vs. rechargeable battery. Most patients were not concerned about the size of the battery. Equal numbers were concerned about surgery to replace the battery, and less than half were concerned about the need to recharge the battery. More than half of patients felt that an acceptable charging frequency was monthly or yearly, and all patients felt that an acceptable charging duration was less than 1 hour, with half of all patients choosing less than 30 min. The main reasons cited for choosing the fixed-life battery were convenience and concern about forgetting to recharge the battery. The main reason for choosing the rechargeable battery was the avoidance of further surgery., Discussion: Most patients in this adult cohort with movement disorders chose the fixed-life battery. The better lifestyle associated with a fixed-life battery is a major factor influencing their choice. Rechargeable batteries may be more acceptable if the recharging process is improved, more convenient, and discreet., Conflict of Interest: The authors' institution has received educational grants from Medtronic, Abbott, and Boston Scientific companies., (© 2018 International Neuromodulation Society.)

Objectives: This study sought to determine whether there is a gender disparity in patients undergoing deep brain stimulation (DBS) surgery for Parkinson's disease (PD) at a single health system, and better understand the reasons for this discrepancy., Materials and Methods: We analyzed data from the University of Miami DBS Database, which included 3251 PD patients, using chi-square, repeated measures ANOVA, and t tests to examine gender differences in the number of patients referred for surgery, reasons for referral, number receiving/not receiving surgery, reasons for not receiving surgery, and postsurgical outcomes., Results: During the study period, 207 PD patients were referred for DBS (75.8% male), and 100 underwent surgery (77.0% male). Of those who did not receive surgery, the most common reasons were need for further medical optimization (26.2%), suboptimal performance on neuropsychological evaluation (22.4%), other reason (20.6%), lost to follow-up (18.7%), or patient preference (12.2%). However, in women one of the most common reasons was patient preference (28.0%), and this was significant compared to men (p < 0.001). Men were more likely to be lost to follow-up (p = 0.046). There was no statistically significant difference in postsurgical outcomes., Conclusions: Despite similar postsurgical improvements, women were less likely to undergo DBS surgery due to their own preference, while men were more likely to be lost to follow-up. These data underscore the need for increased education and awareness of DBS so that all patients with PD who qualify for surgery can benefit from this procedure., (© 2019 International Neuromodulation Society.)

Ethical analyses of the effects of neural interventions commonly focus on changes to personality and behavior, interpreting these changes in terms of authenticity and identity. These phenomena have led to debate among ethicists about the meaning of these terms for ethical analysis of such interventions. While these theoretical approaches have different criteria for ethical significance, they agree that patients' reports are concerning because a sense of self is valuable. In this paper, I question this assumption. I propose that the Buddhist theory of no-self offers a novel approach to making ethical sense of patients' claims following deep brain stimulation. This alternative approach is based on the value of insight into patterns of cause and effect among mental states and actions., (© 2018 John Wiley & Sons Ltd.)

Objective: Deep brain stimulation (DBS) has become a well-established treatment that significantly improves the motor symptoms of Parkinson's disease (PD). Patients may nevertheless experience psychosocial maladjustment after surgery, as reported by an increasing body of research. Yet, no comprehensive theoretical approach has been proposed to account for this. Initially conceptualized for postsurgical epilepsy, the burden of normality (BoN) may be viewed as a model that is potentially applicable to psychosocial maladjustment after PD-DBS., Method: We systematically examined the literature to verify this assumption by scrutinizing the 3 theoretical levels of the BoN, specifically, precursory conditions for the applicability of the model, clinical manifestations of psychosocial maladjustment, and 2 mediating variables: expectations and discarding the roles associated with the pretreatment condition., Results: The applicability of the BoN to PD-DBS found support for the first 2 of these 3 levels in 88 scientific articles included in the review. The number of studies that addressed the mediating variables was nevertheless insufficient to draw any definitive conclusion. The degenerative condition of PD further limits the distinction between symptoms pertaining to psychosocial maladjustment and disease progression., Conclusions: Considering psychosocial maladjustment through the lens of the BoN is complementary to the traditional medical perspective of PD-DBS and illuminates the potential contribution of specialists from multiple disciplines in clinical rehabilitation. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Depression is one of the most disabling conditions in the world. In many cases patients continue to suffer with depressive disorders despite a series of adequate trials of medication and psychotherapy. Neuromodulation treatments offer a qualitatively different modality of treatment that can frequently prove efficacious in these treatment-refractory patients. The field of neuromodulation focuses on the use of electrical/electromagnetic energy, both invasively and noninvasively, to interface with and ultimately alter activity within the human brain for therapeutic purposes. These treatments provide another set of options to offer patients when clinically indicated, and knowledge of their safety, risks and benefits, and appropriate clinical application is essential for modern psychiatrists and other mental health professionals. Although neuromodulation techniques hold tremendous promise, only three such treatments are currently approved by the United States Food and Drug Administration (FDA) for the treatment of major depressive disorder: electroconvulsive therapy (ECT), vagus nerve stimulation (VNS), and repetitive transcranial magnetic stimulation (rTMS). Additionally, numerous other neurostimulation modalities (deep brain stimulation [DBS], magnetic seizure therapy [MST], transcranial electric stimulation [tES], and trigeminal nerve stimulation [TNS]), though currently experimental, show considerable therapeutic promise. Researchers are actively looking for ways to optimize outcomes and clinical benefits by making neuromodulation treatments safer, more efficacious, and more durable.

Background: The availability of technological means to enhance and repair human cognitive function raises questions about the perceived morality of their use. However, we have limited knowledge about the public's intuitive attitudes toward uses of brain stimulation. Studies that enlighten us about the public's willingness to endorse specific uses of brain stimulation on themselves and others could provide a basis to understand the moral psychology guiding intuitions about neuromodulation and opportunities to inform public education and public policy., Objective: Hypothesis: We expected that subjects would be less willing to enhance or repair cognitive functions perceived as more "core" to "authentic" self-identity, prioritize brain stimulation uses for themselves, and more willing to enhance "core" functions in others. Across specific hypothetical uses, we expected the moral acceptability of specific uses to be associated with subjects' willingness to endorse them., Methods: We administered two surveys to the public in which subjects were asked to report how willing they would be to enhance or repair specific cognitive abilities using a hypothetical brain stimulation device called "Ceremode"., Results: Among 894 subjects, we found that subjects were more willing to use technologies to repair other people than themselves. They were most inclined to repair core functions in others. Subjects' ratings of the moral acceptability of specific uses was related to their reported willingness to use brain stimulation., Conclusion: Moral acceptability is related to the public's willingness to use brain stimulation. These findings suggest that the public endorses a generous approach to applying brain stimulation for cognitive gains in others. Further, this study establishes a basis to guide moral psychological studies of cognitive modification and social processes that guide attitudes toward and uses of brain stimulation., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: Patients' expectations are considered to play an important role in subthalamic nucleus (STN) deep brain stimulation (DBS). We explored the relationship among expectations, satisfaction, and outcome 6 years after surgery., Methods: Fifteen patients with Parkinson disease (9 males, mean age 60.5 ± 6.4 years) undergoing STN DBS completed a modified PDQ-39 questionnaire (incorporating an assessment of patients' expected changes in addition to the standard quality of life items) preoperatively and at 6 years postoperatively. A satisfaction questionnaire accompanied the postoperative questionnaire., Results: At 6 years' follow-up, PDQ-39 scores were unchanged from preoperative scores except in the stigma domain, which showed significant improvement. There was no significant difference between the postoperatively rated expected PDQ-39 summary score and the postoperative actual PDQ-39 summary score. However, there was a significant difference between the preoperatively rated expected PDQ-39 summary score and the postoperative actual PDQ-39 summary score. Patients remained highly satisfied with the outcome of surgery (mean satisfaction score 83%). Satisfaction did not correlate with PDQ-39 summary scores, domain scores, or fulfilment of expectations. The more satisfied patients (satisfaction ≥80%) changed their expectations so that their postoperatively rated expectations reflected a less favorable condition, whereas no such change was seen in the less satisfied (satisfaction <80%) patients., Conclusions: Patients remain highly satisfied with STN DBS 6 years after surgery, although quality of life assessed by the PDQ-39 may return to baseline levels. Patients' expectations change over time and may influence patient satisfaction. Managing expectations before and after surgery plays an essential role in STN DBS., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background/aims: Nonrechargeable deep brain stimulation implantable pulse generators (IPGs) for movement disorders require surgical replacement every few years due to battery depletion. Rechargeable IPGs reduce frequency of replacement surgeries and inherent risks of complications but require frequent recharging. Here, we evaluate patient experience with rechargeable IPGs and define predictive characteristics for higher satisfaction., Methods: We contacted all patients implanted with rechargeable IPGs at a single center in a survey-based study. We analyzed patient satisfaction with respect to age, diagnosis, target, charging duration, and body mass index. We tabulated hardware-related adverse events., Results: Dystonia patients had significantly higher satisfaction than Parkinson's disease patients in recharging, display, programmer, and training domains. Common positive responses were "fewer surgeries" and "small size." Common negative responses were "difficulty finding the right position to recharge" and "need to recharge every day." Hardware-related adverse events occurred in 21 of 59 participants., Conclusion: Patient experience with rechargeable IPGs was largely positive; however, frustrations with recharging and adverse events were common. Dystonia diagnosis was most predictive of high satisfaction across multiple categories, potentially related to expected long disease duration with need for numerous IPG replacements., (© 2019 S. Karger AG, Basel.)

Background: Comments made by readers in response to news articles about current events can provide profound insights into public understanding of and perspectives on those events. Here, in follow up to a paper published last year in this journal, we examined reader comments to articles in newspapers and magazines about neurosurgical interventions for treating psychiatric illness., Method: We conducted a thematic analysis of these comments (N = 662 coded units of data) posted in response to 115 newspaper and magazine articles from four countries (Canada, USA, Germany, and Spain) between 2006 and 2017. The comments were coded using an iteratively refined coding scheme that was structured around four a priori categories based on results from the parent study and two new categories that emerged., Results: We found many references to historical psychosurgery and mostly negative and pessimistic comments about ablative neurosurgical interventions. Comments to deep brain stimulation were more positive, and comments to optogenetics most controversial. We also found many expressions of distrust of medical professionals in the context of interventions on the brain and concerns about social and individual control., Conclusions: Overall, results suggest there is still much work to be done to raise public awareness about re-emerging and new neurosurgical interventions. Balanced discussion is needed if these approaches are to find a place in health care for psychiatric disorders.

Background: In closed-loop on-demand control (ODC) of deep brain stimulation (DBS), stimulation is applied only when symptoms appear. Following stimulation of a fixed duration, DBS is switched off until the symptoms reappear. By repeating these demand-driven cycles, the amount of stimulation delivered can be decreased, thereby reducing DBS side-effects and improving battery-life of the pulse-generator. This article introduces R o metric for quantification of degree of benefit of ODC and explores candidate selection in tremor-dominant Parkinson's disease (PD)., Method: The study was performed on nine PD patients previously implanted with Medtronic DBS systems. Accelerometer sensor was placed on the tremor-dominant hand to detect onset of tremor. Fixed duration of stimulation (DS) of 20-80 sec was applied. Once the tremor was observed, stimulation was switched on. These trials were repeated during resting, postural, and kinetic conditions. R o metric was calculated as the ratio of stimulation-off tremor-free period to the DS. R o calculated at different DS were compared for each patient., Results: We found that for each patient, R o varied with DS and an optimal DS * gave a higher percentage of stimulation-off time. Average R o at DS * varied from 0.554 to 4.24 for eight patients giving 35%-80% stimulation-off time., Conclusions: R o values can be used for selection of optimal DS * in ODC. Three of nine patients were found to be tremor-free without stimulation for >50% of total time with even up to 80% in one patient. Patients with low R o may not benefit from ODC in DBS, where the trade-off between having side-effects and using ODC system will need to be assessed., (© 2018 International Neuromodulation Society.)

Parkinson's disease (PD) is a neurodegenerative disorder involving the basal ganglia, resulting in motor and extra-motor deficits. These extra-motor deficits may be reflective of a self-regulatory deficit impacting patients' ability to regulate cognitive processes, thoughts, behaviors, and emotions. There is a need to further examine the prevalence and range of self-regulation (SR) and executive functioning (EF) impairments in PD. This study sought to do so in a sample of patients with PD (N = 31) who underwent deep brain stimulation (DBS) surgery for motor symptom treatment. Patients completed measures indicative of SR and EF including neurocognitive tests, heart rate variability (HRV), and self-report questionnaires to examine these constructs in PD. The highest prevalence of impairments were observed for total impulse control disorder (ICD) symptoms (74%), depressive symptoms (48%), verbal fluency (phonemic: 39%; semantic: 36%), mental flexibility (32%), and self-reported SR impairments (Metacognition: 32%; Behavioral Regulation: 29%). Correlations among theoretically related constructs (i.e., SR, EF) were modest and variable; challenging the idea that SR is a unitary construct for which different domains depend on a common resource. In patients with PD post-DBS, higher resting HRV, thought to be indicative of better autonomic functioning, was linked to better EF in some instances but not others and not significantly associated with self-report SR. Overall, patients with PD exhibit various extra-motor deficits, ranging from subtle to severe. Health care professionals working with patients with PD should recognize the presence of extra-motor deficits, particularly ICDs, and obstacles that might arise from such impairments in patients' daily lives., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: To determine using a repeated-measures, prospective design whether deep brain stimulation (DBS) results in changes in the importance of symptom and behavioral goals individually identified by patients with Parkinson disease (PD) before DBS surgery., Methods: Fifty-two participants recruited from a consecutive series completed a semistructured interview soliciting their rank-ordered symptom and behavioral goals and corresponding visual analog scales measuring perceived symptom severity and limits to goal attainment. Rank orders were reassessed at 2 times after DBS. Changes in rank order over time were examined with χ 2 analyses. The relationships between change in symptom severity/limits to behavioral goal attainment and change in rank order were examined with mixed-effects linear regression models., Results: Most participants changed the rank order of their symptom (81%) and behavioral (77%) goals 3 months after DBS surgery. Change in rank order of symptom goals was significantly related to change in severity ratings such that improvements in self-reported symptom severity were associated with reductions in rank. In contrast, no such relationship was evident for the behavioral goals., Conclusion: These data illustrate how patients' primary goals for DBS shift early in stimulation and highlight the important differences between symptom and behavioral goals. Changes in the rank order of symptom goals were related to changes in symptom severity, whereas subtler shifts in behavioral goals were unrelated to improvements after DBS. This observation suggests that DBS does not affect goals that may be more reflective of core personal values. The findings provide empiric data that can help improve the informed consent process., (© 2018 American Academy of Neurology.)

The term movement disorders is misleading in the implication that the symptoms are limited to motor problems. Most movement disorders include a variety of neurobehavioral and neurocognitive symptoms that require neuropsychological expertise. The goal of this paper is to provide a rationale and practical roadmap for neuropsychologists' involvement in a Movement Disorders team with a specific focus on pre-operative deep brain stimulation (DBS) evaluations. Pragmatic recommendations regarding requisite skills, clinical practice, recommendations, communication, and benefits are outlined.

The notion that schizophrenia is a neurodevelopmental disorder in which neuropathologies evolve gradually over the developmental course indicates a potential therapeutic window during which pathophysiological processes may be modified to halt disease progression or reduce its severity. Here we used a neurodevelopmental maternal immune stimulation (MIS) rat model of schizophrenia to test whether early targeted modulatory intervention would affect schizophrenia's neurodevelopmental course. We applied deep brain stimulation (DBS) or sham stimulation to the medial prefrontal cortex (mPFC) of adolescent MIS rats and respective controls, and investigated its behavioral, biochemical, brain-structural and -metabolic effects in adulthood. We found that mPFC-DBS successfully prevented the emergence of deficits in sensorimotor gating, attentional selectivity and executive function in adulthood, as well as the enlargement of lateral ventricle volumes and mal-development of dopaminergic and serotonergic transmission. These data suggest that the mPFC may be a valuable target for effective preventive treatments. This may have significant translational value, suggesting that targeting the mPFC before the onset of psychosis via less invasive neuromodulation approaches may be a viable preventive strategy.

This article evaluates the feasibility of a nursing intervention when adjusting to deep brain stimulation for Parkinson disease. Eight couples were included in the study. Main activities of the intervention were a diary and individualized meetings between nurses, patients, and spouses with a focus on everyday life and expectations to deep brain stimulation. All meetings were audio recorded and analyzed together with the content of the diary. The intervention was evaluated as feasible and experienced as meaningful. It supports the need for individualized care involving both patients and spouses and contributes to the development of an evidence-based nursing practice.

Background: Deep brain stimulation (DBS), a surgically based treatment for people living with Parkinson's disease (PD), can result in a significant improvement of motor symptoms. However, the broader impact of DBS and the changes it creates are not well understood. Greater understanding of the experiences and needs related to DBS would enable development of relevant outcome measures and supports., Objectives: To explore the lived experiences of people undergoing DBS for Parkinson's disease., Methods: A descriptive phenomenological study was undertaken exploring experiences, perspectives and outcomes with key stakeholders. Semi-structured, audiotaped interviews were undertaken with people with PD who have had DBS, their family members and health professionals across four states and territories in Australia., Results: Perspectives and experiences of 14 people with PD undergoing DBS, 10 family members and 11 health professionals were analysed. Occupations emerged as a key aspect throughout the DBS experience. Two major themes captured the role of occupation in relation to DBS: Occupations as a barometer, where occupational experiences and performances shaped people's understanding of their condition, the impact of treatments and their overall adjustment; and Shifting occupational identity where the life transition of DBS altered the occupational experiences of relationships, volition, roles and responsibilities of people with PD and their family members., Conclusion: Occupational experiences and changes served as an important way for people with PD and their families to understand and communicate their experiences of PD and related treatments. There is an identified need for outcome measures and clinical education and interventions to reflect this., (© 2017 Occupational Therapy Australia.)

Background: Deep brain stimulation (DBS) indications include movement disorders, psychiatric affections, or epilepsy in which patients risk social isolation heightened by abnormal motions or behavioral patterns. Further stigmatization after DBS surgery from head shaving, visible scarring, or disfigurement from bulky lead insertion points should be avoided., Objective: We present a cosmetically optimized, adapted submammarian approach for DBS neurostimulator implantation that leaves the décolletage untouched., Methods: Over 24 months, 61 patients suffering from Parkinson disease, dystonia, or tremor underwent DBS surgery. The modified, submammarian approach was compared with the conventional infraclavicular approach regarding clinical outcome, complications, and limitations over a 5-year follow-up., Results: Neurostimulators were implanted in a paraumbilical (n = 20) or infraclavicular position (n = 41; Parkinson disease, n = 27; dystonia, n = 9; tremor, n = 5), the latter using a standard (n = 16), modified juxta-axillary (n = 6), or submammarian approach (n = 19; 18 women, 1 man with significant gynecomastia). After 12 months, there was no significant difference in the infection rate and one event of rebleeding in each group. Overall, operation time was longer (+20 minutes) for the submammarian versus standard, infraclavicular approach, but acceptable. Neurostimulator replacement was, necessary within 5 years due to advanced battery discharge (n = 32). Battery replacement was easily achieved using the submammarian approach (n = 14), again with increased surgical time (+20 minutes), and iatrogenic damage to extensions was avoidable., Conclusions: A submammarian approach might be an alternative for infraclavicular implantation of DBS neurostimulators, particularly in female patients in the context of cosmetically optimized surgery. Patients' self-perception and self-esteem may be strengthened, potentially enabling them to better cope with disease., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Rational: The therapeutic effect of deep brain stimulation (DBS) for refractory obsessive-compulsive disorder (OCD) has been studied, but complications after this treatment have rarely been noted., Patient Concerns: A 28-year-old man with treatment-resistant OCD received bilateral ventral capsule/ventral striatum stimulation for 12 months., Diagnosis: Compulsive skin-picking behavior and infection were noted following 12-month DBS treatment., Intervention: We removed the implanted right-side pulse generator., Outcomes: The local inflammation and skin-picking behavior gradually improved. The stimulator device was re-implanted 4 months later., Lessons: We suggest that patients with the OC spectrum should be evaluated for skin-picking behaviors during presurgical and postsurgical follow-up to reduce the infection and device removal rates.

Background: Awake craniotomy for tumor resection and epilepsy surgery is a well-tolerated procedure. Qualitative data on patients' experience of awake deep-brain stimulation (DBS) are, however, lacking. We collected qualitative data on patients' experience of awake DBS with a view to identifying areas for improvement., Methods: Forty-one patients undergoing DBS for Parkinson disease between 2009 and 2015 were surveyed with a structured questionnaire designed to receive patient feedback regarding perioperative management of the awake stage of the procedure., Results: More than 90% of patients felt well-informed. Most remembered the procedure, and almost all were happy that they did. One half of the patients experienced pain, often significant, during the procedure. This mainly occurred during burr-hole drilling and stereotactic frame placement., Conclusions: Although awake DBS is well-tolerated, pain and off-period symptoms are an issue for a significant number of patients. Efforts should be made to minimize these unpleasant aspects of awake DBS., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Introduction: We aimed to examine temporal changes in health-related quality of life (HRQOL) and its relationship with motor and cognitive functions in patients with Parkinson's disease (PD) after subthalamic nucleus deep brain stimulation (STN-DBS)., Methods: In total, 31 patients with PD were enrolled in this study (mean age: 66.7±0.9years; mean disease duration: 11.6±3.7years). Participants completed the Unified Parkinson's Disease Rating Scale and the Parkinson's Disease Questionnaire-39. Cognitive function was assessed using the Mini Mental State Examination, the Frontal Assessment Battery, and the Montreal Cognitive Assessment. Postoperative evaluation was performed at three months, one year, three years, and five years after surgery; temporal changes in the correlation between HRQOL and motor and cognitive functions were evaluated at all follow-up periods., Results: All patients completed postoperative clinical evaluations after three months, after one year. Of the 31 participants, twelve completed postoperative clinical evaluations after three years and seven after five years. Motor functions showed significant improvement over the five-year follow-up period. The mobility subdomain of the HRQOL worsened whereas the total score did not change significantly over years. Cognitive functions were not significantly impaired during follow-up periods. HRQOL was basically not significantly correlated with motor and cognitive functions during the follow-up period., Conclusions: The mobility subdomain of the HRQOL worsened after surgery, and the improvement in motor functions was basically not correlated with HRQOL after STN-DBS in patients with PD. Cognitive functions were not significantly impaired during follow-up periods., (Copyright © 2017. Published by Elsevier B.V.)

In this paper, I focus on a kind of medical intervention that is at the same time fascinating and disturbing: identity-changing interventions. My guiding question is how such interventions can be ethically justified within the bounds of contemporary bioethical mainstream that places great weight on the patient's informed consent. The answer that is standardly given today is that patients should be informed about the identity effects, thus suggesting that changes in identity can be treated like 'normal' side effects. In the paper, I argue that this approach is seriously lacking because it misses important complexities going along with decisions involving identity changes and consequently runs into mistakes. As a remedy I propose a new approach, the 'perspective-sensitive account', which avoids these mistakes and thus provides the conceptual resources to systematically reflect on and give a valid consent to identity-changing interventions., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

When faced with difficult decisions, people prefer to stay with the default. This status quo bias often leads to suboptimal choice behavior. Neurophysiological evidence suggests a pivot role of the Subthalamic Nucleus (STN) for overcoming such status quo bias in difficult decisions, but causal evidence is lacking. The present study investigated whether subthalamic deep brain stimulation (DBS) in patients with Parkinson's disease (PD) influences the status quo bias. Eighteen PD patients treated with STN-DBS performed a difficult perceptual decision task incorporating intrinsic status quo option. Patients were tested with (ON) and without (OFF) active STN stimulation. Our results show that DBS of the STN affected perceptual decision making in PD patients depending on the difficulty of decision. STN-DBS improved difficult perceptual decisions due to a selective increase in accuracy (hit rate) that was independent of response bias (no effect on false alarm rate). Furthermore, STN-DBS impacted status quo bias as a function of baseline impulsivity. In impulsive patients, STN-DBS increased the default bias, whereas in less impulsive PD patients, DBS of the STN reduced the status quo bias. In line with our hypothesis, STN-DBS selectively affected the tendency to stick with the default option on difficult decisions, and promoted increased decision accuracy. Moreover, we demonstrate the impact of baseline cognitive abilities on DBS-related performance changes in PD patients., (Copyright © 2016 IBRO. Published by Elsevier Ltd. All rights reserved.)

Objectives: Deep brain stimulation (DBS) is a form of biotechnological surgery which has had considerable success for the motor improvement of Parkinson's disease and related disorders. Paradoxically, this observed motor improvement is not matched with improved psychosocial adjustment. This study contributes to a small but growing body of research aiming to understand this paradox. We conclude by discussing these aspects from a phenomenological and health psychology understanding of decision-making, human affectivity, and embodiment., Design: A hermeneutic phenomenological case study., Methods: Semi-structured interviews with one woman with Parkinson's disease were carried out paying particular attention to (1) how the decision to have the procedure was made and (2) the affective experience in the time periods immediately prior to the procedure, shortly after and 1 month later., Results: The thematic structure derived from the hermeneutic phenomenological analysis comprises the following experiential aspects: Making the decision: 'I was feeling rather at a dead end with my Parkinson's'; Shifting emotions and feelings: 'Terrified, excited, disappointed, overjoyed'; Embodied meaning: 'This extraordinary procedure where they were going to drill holes in my head'., Conclusions: This research has elucidated the complexity of decision-making, the emotional landscape, and specific bodily nature of the experience of DBS. It has suggested implications for practice informed by both existential-phenomenological theory and health psychology. Statement of contribution What is already known on this subject? Deep brain stimulation (DBS) is a newly developed form of biotechnological surgery and research indicates a mismatch between motor success and psychosocial adjustment. Most studies focuses on life post-DBS and there is relatively little research on how people make the decision to have the procedure, what their experience is of undergoing it including its emotional aspects. What does this study add? This study demonstrates that making decisions with respect to health and illness is complex and best understood as a form of embodied cognition. Findings indicate that the experience of undergoing DBS surgery is one of multiple emotions, especially fear and feelings of 'unhomelikeness'. This study highlights the relevance of a lifeworld, people-centered and humanizing approach to helping health care professionals support people through an illness/treatment trajectory., (© 2016 The British Psychological Society.)

Objective: To report prospective repeated measures data detailing the perceived benefit of deep brain stimulation (DBS) on the most commonly cited symptom and activity goals identified by patients with Parkinson disease., Methods: Fifty-two participants were recruited from a consecutive series. Participants completed a semi-structured interview soliciting their symptom and behavioral goals and corresponding visual analog scales measuring perceived symptom severity and limits to goal attainment. Severity ratings were completed prior to and at 2 times following DBS. Changes in severity over time were assessed using a mixed effects linear model. The pattern of relationships between the severity ratings and standard clinical research (SCR) measures routinely administered were examined using Pearson correlations., Results: The most common symptom goals were improvements in tremor, gait, and nonmotor symptoms, whereas the most frequent behavioral goals related to interpersonal relationships, work, and avocational pursuits. Most severity ratings were significantly correlated with each other but not with the SCR measures. Significant improvements were evident on all SCR measures after DBS. Participants' severity ratings for their symptom and behavioral goals improved significantly over time although not all severity ratings changed in the same manner., Conclusions: These data illustrate that improvements in participants' individually defined goals were evident over time and that some of these improvements occurred in areas in which the benefits associated with DBS are not as well-documented. The participants' severity ratings were not redundant with SCR measures, suggesting that novel and potentially important information can be gleaned by systematically assessing patients' goals., (© 2016 American Academy of Neurology.)

Background: Dystonia is characterised by involuntary movements and postures. Deep Brain Stimulation (DBS) is effective in reducing dystonic symptoms in primary dystonia in childhood and to lesser extent in secondary dystonia. How families and children decide to choose DBS surgery has never been explored., Aims: To explore parental decision-making for DBS in paediatric secondary dystonia., Methods: Data was gathered using semi-structured interviews with eight parents of children with secondary dystonia who had undergone DBS. Interviews were analysed using Interpretative Phenomenological Analysis., Results: For all parents the decision was viewed as significant, with life altering consequences for the child. These results suggested that parents were motivated by a hope for a better life and parental duty. This was weighed against consideration of risks, what the child had to lose, and uncertainty of DBS outcome. Decisions were also influenced by the perspectives of their child and professionals., Conclusions: The decision to undergo DBS was an ongoing process for parents, who ultimately were struggling in the face of uncertainty whilst trying to do their best as parents for their children. These findings have important clinical implications given the growing referrals for consideration of DBS childhood dystonia, and highlights the importance of further quantitative research to fully establish the efficacy of DBS in secondary dystonia to enhance informed decision-making., (Copyright © 2016. Published by Elsevier Ltd.)

Deep brain stimulation (DBS) of the ventral capsule/ventral striatum (VC/VS) is a novel therapy for neuropsychiatric disorders. Hypomania is a known complication of VC/VS DBS, but who is at risk is less understood. Factors such as family history, combined with details of DBS programming, might quantify that risk. The authors performed an iterative modeling procedure on a VC/VS DBS patient registry to identify key predictors. Hypomania was less common for men and for patients stimulated on the ventral right contact. It was more common with right monopolar stimulation. These findings may help to establish decision rules to reduce complications of VC/VS DBS.

One of the topics that often comes up in ethical discussions of deep brain stimulation (DBS) is the question of what impact DBS has, or might have, on the patient's self. This is often understood as a question of whether DBS poses a threat to personal identity, which is typically understood as having to do with psychological and/or narrative continuity over time. In this article, we argue that the discussion of whether DBS is a threat to continuity over time is too narrow. There are other questions concerning DBS and the self that are overlooked in discussions exclusively focusing on psychological and/or narrative continuity. For example, it is also important to investigate whether DBS might sometimes have a positive (e.g., a rehabilitating) effect on the patient's self. To widen the discussion of DBS, so as to make it encompass a broader range of considerations that bear on DBS's impact on the self, we identify six features of the commonly used concept of a person's "true self." We apply these six features to the relation between DBS and the self. And we end with a brief discussion of the role DBS might play in treating otherwise treatment-refractory anorexia nervosa. This further highlights the importance of discussing both continuity over time and the notion of the true self.

In 1998, we proposed deep brain stimulation as a last-resort treatment option for patients suffering from severe, treatment-resistant obsessive-compulsive disorder (OCD). Here, 24 OCD patients were included in a long-term follow-up study to evaluate the effects of electrical stimulation in the anterior limbs of the internal capsule (ALIC) and bed nucleus of the stria terminalis (BST). We find that electrical stimulation in the ALIC/BST area is safe and significantly decreases obsessions, compulsions, and associated anxiety and depressive symptoms, and improves global functioning in a blinded crossover trial (n=17), after 4 years (n=18), and at last follow-up (up to 171 months, n=24). Moreover, our data indicate that BST may be a better stimulation target compared with ALIC to alleviate OCD symptoms. We conclude that electrical stimulation in BST is a promising therapeutic option for otherwise treatment-resistant OCD patients.