Risk factors for behavioral and psychotic dysregulation at the epilepsy monitoring unit in patients with intracranial electrodes.

OBJECTIVE: Aberrant behavior in patients with epilepsy (PWE) admitted to an epilepsy monitoring unit (EMU) can endanger their safety. We sought to identify predictive factors for post-ictal behavioral dysregulation and psychosis in patients with refractory epilepsy being monitored at an EMU. METHODS: Retrospective data were gathered from electronic patient files of all patients with refractory epilepsy who underwent intracranial registration at our EMU. We assessed behavioral and psychotic dysregulations by reviewing clinical notes, administered emergency medication, and reports of injuries or casualties in patients and nurses. In addition, we compared patient demographic characteristics, clinical characteristics, and antiepileptic drug (AED) profiles between patients with and without behavioral and/or psychotic dysregulation. RESULTS: Out of 73 admissions, 23 patients (32%) experienced behavioral dysregulation, and five patients experienced psychosis (7%). Behavioral dysregulation was only significantly associated with a previous history of interictal or postictal psychosis. Psychotic dysregulation is significantly associated with a psychiatric history, including a history of agitation or psychosis, whether or not epilepsy-related. For both types of dysregulations, there was no relation with a pre-admission frequency of seizures, clustering of seizures during monitoring, or a temporal focus of seizures. We could not report a relationship between AED use, tapering, and the occurrence of dysregulation. CONCLUSION: We conclude that a psychiatric history, including a history of agitation and psychosis, is related to an increased risk of behavioral and psychotic dysregulation in patients undergoing invasive seizure monitoring at the EMU.

[Ethical issues for the further development of psychiatric deep brain stimulation]. / Ethische aandachtspunten bij de verdere ontwikkeling van psychiatrische diepe hersenstimulatie.

BACKGROUND: Except in the case of obsessive-compulsive disorder, deep brain stimulation (DBS) for psychiatric indications is an experimental treatment, reserved for the most severe and treatment resistant cases. AIM: To discuss ethical aspects for the further development of DBS in psychiatry. METHOD: Ethical reflection. RESULTS: The low number of patients and the experimental character of the treatment hamper the collection of scientific evidence and the safeguarding of patients being indicated for DBS. Apart from that, special care should be taken in assessing competency and the ability to provide informed consent. CONCLUSION: Interest in the subjective experiences of patients being treated with DBS, proactive ethical reflection and an increase in the scale of research efforts are essential for the acceptance and further development of DBS for psychiatric indications.

The TRACK-PD study: protocol of a longitudinal ultra-high field imaging study in Parkinson's disease.

BACKGROUND: The diagnosis of Parkinson's Disease (PD) remains a challenge and is currently based on the assessment of clinical symptoms. PD is also a heterogeneous disease with great variability in symptoms, disease course, and response to therapy. There is a general need for a better understanding of this heterogeneity and the interlinked long-term changes in brain function and structure in PD. Over the past years there is increasing interest in the value of new paradigms in Magnetic Resonance Imaging (MRI) and the potential of ultra-high field strength imaging in the diagnostic work-up of PD. With this multimodal 7 T MRI study, our objectives are: 1) To identify distinctive MRI characteristics in PD patients and to create a diagnostic tool based on these differences. 2) To correlate MRI characteristics to clinical phenotype, genetics and progression of symptoms. 3) To detect future imaging biomarkers for disease progression that could be valuable for the evaluation of new therapies. METHODS: The TRACK-PD study is a longitudinal observational study in a cohort of 130 recently diagnosed (≤ 3 years after diagnosis) PD patients and 60 age-matched healthy controls (HC). A 7 T MRI of the brain will be performed at baseline and repeated after 2 and 4 years. Complete assessment of motor, cognitive, neuropsychiatric and autonomic symptoms will be performed at baseline and follow-up visits with wearable sensors, validated questionnaires and rating scales. At baseline a blood DNA sample will also be collected. DISCUSSION: This is the first longitudinal, observational, 7 T MRI study in PD patients. With this study, an important contribution can be made to the improvement of the current diagnostic process in PD. Moreover, this study will be able to provide valuable information related to the different clinical phenotypes of PD and their correlating MRI characteristics. The long-term aim of this study is to better understand PD and develop new biomarkers for disease progression which may help new therapy development. Eventually, this may lead to predictive models for individual PD patients and towards personalized medicine in the future. TRIAL REGISTRATION: Dutch Trial Register, NL7558 . Registered March 11, 2019.

Clinical Markers of Anxiety Subtypes in Parkinson Disease.

OBJECTIVE: The aim of this work was to investigate marker profiles for proposed anxiety subtypes in Parkinson disease (PD). METHODS: We used the persistent anxiety, episodic anxiety, and avoidance behavior subscales of the Parkinson Anxiety Scale as dependent variables in multivariable linear regression analyses using a cross-sectional data set of 311 patients with PD. Independent variables consisted of a range of demographic, psychiatric, and disease-specific markers. RESULTS: In the most parsimonious model of persistent anxiety, higher Hamilton Depression Rating Scale scores, a history of anxiety, fewer years of education, lower Mini-Mental State Examination scores, lower Lawton Instrumental Activities of Daily Living scores, female sex, and complications of therapy (higher Unified Parkinson Disease Rating Scale part IV scores) were all associated with more severe persistent anxiety. Markers associated with more severe episodic anxiety included PD-specific disturbances of activities of daily living, complications of therapy, higher Hamilton Depression Rating Scale scores, female sex, and a history of anxiety. Finally, higher Hamilton Depression Rating Scale scores, a history of anxiety, complications of therapy, and longer disease duration were associated with avoidance behavior. After excluding clinically depressed patients with PD, disease severity and longer disease duration were significantly associated with episodic anxiety, but not with persistent anxiety. CONCLUSION: Persistent anxiety is mainly influenced by nonspecific markers, while episodic anxiety seems to be more PD-specific compared to persistent anxiety and may be more situational or contextual. These results provide support for possible distinct underlying constructs for anxiety subtypes in PD.

[Ethical issues relating to deep brain stimulation for psychiatric disorders]. / Ethische overwegingen bij de behandeling van psychiatrische aandoeningen met diepe hersenstimulatie.

BACKGROUND: Deep brain stimulation (dbs) can improve the quality of life of patients with therapy-resistant obsessive compulsive disorder (ocd). For other psychiatric indications, dbs should still be regarded as an experimental treatment.
AIM: To discuss potential ethical issues associated with the use of dbs in the treatment of psychiatric disorders.
METHOD: Ethical discourse.
RESULTS: The ethical issues associated with the use of dbs to treat psychiatric disorders are no different from those that may arise during psychotherapeutic or pharmacological treatments. However, in view of the intensive and invasive nature of dbs, special attention should be given to establishing the indication for dbs treatment and discussions about the continuation or cessation of dbs in case of side-effects or lack of effect. Except in the case of ocd, dbs in psychiatry is provided mainly in a research context in which ethical questions, such as those relating to competence, need to be carefully considered.
CONCLUSION: The basic ethical principles in medicine generally provide an adequate basis for guiding clinical decisions relating to the use of dbs in the treatment of psychiatric disorders. However, as dbs treatment for psychiatric disorders continues to develop, proactive reflection on ethical issues is warranted.

[Dilemmas in the treatment of psychiatric symptoms in patients with Parkinson's disease]. / Dilemma's bij de behandeling van psychiatrische symptomen bij patiënten met de ziekte van Parkinson.

BACKGROUND: Psychiatric symptoms are common in Parkinson's disease (PD) and may complicate treatment. AIM: To review the prevalence and treatment options of psychiatric symptoms in PD patients and discuss the dilemmas that may arise. METHOD: Literature review. RESULTS: Psychiatric complaints, including depression, anxiety, apathy, impulse control disorders, hallucinations, delusions, sleep disturbances, and cognitive symptoms, frequently occur in PD patients. These symptoms have a great influence on the general functioning and quality of life of the patient. When treating these symptoms, adjusting neurological treatment and starting or adjusting psychotherapeutic or psychopharmacological treatment may be necessary. Even if individual symptoms can often be treated adequately, unwanted side effects in other symptom domains have to be taken into consideration. CONCLUSION: Adequate treatment of neuropsychiatric symptoms in PD patients is complex, and requires close multidisciplinary collaboration, especially in more advanced disease stages.

Designing a new scale to measure anxiety symptoms in Parkinson's disease: item selection based on canonical correlation analysis.

BACKGROUND AND PURPOSE: The lack of appropriate measures has hindered the research on anxiety syndromes in Parkinson's disease (PD). The objective of the present cross-sectional, international study was to identify shared elements and grouping of components from anxiety scales as a basis for designing a new scale for use in PD. METHODS: For this purpose, 342 consecutive PD patients were assessed by means of the Mini International Neuropsychiatric Inventory (depression and anxiety sections), the Clinical Global Impression of severity of the anxiety symptoms, the Hamilton Anxiety Rating Scale (HARS), the Neuropsychiatric Inventory (section E), the Beck Anxiety Inventory (BAI) and the Anxiety subscale of the Hospital Anxiety and Depression Scale (HADS-A). RESULTS: As the HADS-A showed a weak correlation with the HARS and BAI, it was not considered for more analyses. HARS and BAI exploratory factor analysis identified nine factors (62% of the variance), with only two of them combining items from both scales. Therefore, a canonical correlation model (a method to identify relations between components of two groups of variables) was built and it showed four factors grouping items from both scales: the first factor corresponded to 'generalized anxiety'; the second factor included muscular, sensory and autonomic 'non-specific somatic symptoms'; the third factor was dominated by 'respiratory symptoms'; and the fourth factor included 'cardiovascular symptoms'. CONCLUSIONS: BAI is heavily focused on panic symptoms, whilst HARS is more focused towards generalized anxiety symptoms. The new scale should include additional components in order to assess both episodic and persistent anxiety as well as items for evaluation of avoidance behaviour.

[Behavioural standard or coercive measure? Some considerations regarding the special issue on ROM]. / ROM: gedragsnorm of dwangmaatregel? Overwegingen bij het themanummer over routine outcome monitoring.

BACKGROUND: The cost of mental health care has possibly risen more than costs in other sectors of health care in the Netherlands. In an attempt to control the rising costs, new policies have been implemented that include the introduction of selective financial penalties for those in need of mental health care as well as the start of performance-based mental health care reimbursement. In order to achieve the latter goal, a nation-wide large-scale data collection was introduced based on clinical routine outcome monitoring (ROM) data, with a view to using these data for benchmarking. AIM: Closer inspection of the benchmarking efforts in terms of scientific validity. METHOD: Qualitative review and analysis. RESULTS: Analysis shows that the type of ROM data that is collected in the Netherlands is valid for tracking the outcomes of individual patients, but unsuitable for performance comparisons between institutions for reasons of case-mix, instrument-mix, bias and lack of sensitivity. CONCLUSION: Attempts to introduce benchmarking based on rom will probably have a negative impact on the practice of mental health care in the Netherlands. More input from mental health professionals and scientists is required in order to identify more rational and efficient ways of spending scarce resources.

Diagnostic criteria for apathy in clinical practice.

BACKGROUND: Apathy is an important and distressing behavioural symptom in Alzheimer's disease and in various neuropsychiatric disorders. Recently, diagnostic criteria for apathy have been proposed. OBJECTIVES: In groups of patients suffering from different neuropsychiatric diseases, (i) to estimate the prevalence of patients meeting the proposed diagnostic criteria; (ii) to estimate the concurrent validity of the criteria with the neuropsychiatric inventory (NPI) apathy item; (iii) to identify the most frequently met criteria or sub-criteria in each specific neuropsychiatric disease and (iv) to estimate the inter-observer reliability of the diagnostic criteria for apathy. METHODS: This cross-sectional, multicentric, observational study was performed on 306 patients. Each of the participating centres had to check the presence of apathy according to the diagnostic criteria for apathy in consecutive patients belonging to the following diagnoses list: Alzheimer disease (AD), mixed dementia, mild cognitive impairment (MCI), Parkinson's disease (PD), Schizophrenia (DSM-IV) and major depressive episode. In addition to the clinical interview, the assessment included the Mini Mental Score Examination (MMSE) and the NPI. At the end of the visit, clinicians were required to check the diagnostic criteria for apathy. RESULTS: Using the diagnostic criteria for apathy, the frequency of apathy was of 53% in the whole population, 55% in AD, 70% in mixed dementia, 43% in MCI, 27% in PD, 53% in schizophrenia and 94% in major depressive episode. In AD, mixed dementia, MCI and PD, the NPI apathy score was significantly higher for patient fulfilling the apathy criteria. Goal-directed cognitive activity (criteria B2-Cognition) was the most frequently observed domain followed by goal-directed behaviour (criteria B1-Behaviour) and emotion (criteria B3), respectively. Inter-rater reliability was high for the overall diagnostic (κ coefficient = 0.93; p = 0.0001) and for each criteria. CONCLUSION: This study is the first one to test the diagnostic criteria for apathy in clinical practice. Results make the diagnostic criteria useful for clinical practice and research.

[Diagnosis and assessment of psychopathological symptoms in Parkinson's disease]. / Diagnostiek en beoordeling van psychopathologische symptomen bij de ziekte van Parkinson.

BACKGROUND: Parkinson's disease(PD) is a multidimensional disorder characterized primarily by motor symptoms, but often accompanied by non-motor symptoms, including psychopathological and autonomic symptoms. AIM: To provide an overview of current knowledge concerning the diagnosis, assessment and epidemiology of a number of psychopathological syndromes in PD. METHODS: Relevant literature is discussed. RESULTS: Depressive disorders, apathy, anxiety, cognitive impairment and hallucinations are all common in PD . For most of these syndromes, there is consensus regarding diagnostic criteria, and reliable rating scales are available. In general, an inclusive approach is recommended, which means that without interpretation or attribution, all symptoms present contribute to a psychopathological diagnosis. All psychopathological syndromes are more common in the hypokinetic rigid subtype of the disease. CONCLUSION: The recognition and treatment of psychopathological symptoms in PD require specific expertise. In the treatment of pd patients, therefore, it is essential that there should be multidisciplinary collaboration between the neurologist, the neuropsychologist and the psychiatrist.

[Apathy: from symptom to syndrome]. / Apathie: van symptoom naar syndroom.

BACKGROUND: Apathy is a major behavioural problem in dementia and other neuropsychiatric diseases. AIM: To provide an overview of the development of the concept of apathy and its importance for clinical practice. METHOD: The article is based on a review of the literature. RESULTS: There is evidence that apathy should be regarded as a syndrome rather than a symptom. Apathy is a construct that has several aspects and can occur across a range of diseases.It can occur as part of depressive disorders or cognitive deterioration or it can occur independently. Recently, diagnostic criteria for the diagnosis of the apathy syndrome have been formulated on the basis of an international consensus. CONCLUSION: The diagnostic criteria that have been formulated recently will make it much easier to validate measuring instruments and research into the epidemiology, aetiology, pathophysiology and treatment of apathy.

Proposed diagnostic criteria for apathy in Alzheimer's disease and other neuropsychiatric disorders.

There is wide acknowledgement that apathy is an important behavioural syndrome in Alzheimer's disease and in various neuropsychiatric disorders. In light of recent research and the renewed interest in the correlates and impacts of apathy, and in its treatments, it is important to develop criteria for apathy that will be widely accepted, have clear operational steps, and that will be easily applied in practice and research settings. Meeting these needs is the focus of the task force work reported here. The task force includes members of the Association Française de Psychiatrie Biologique, the European Psychiatric Association, the European Alzheimer's Disease Consortium and experts from Europe, Australia and North America. An advanced draft was discussed at the consensus meeting (during the EPA conference in April 7th 2008) and a final agreement reached concerning operational definitions and hierarchy of the criteria. Apathy is defined as a disorder of motivation that persists over time and should meet the following requirements. Firstly, the core feature of apathy, diminished motivation, must be present for at least four weeks; secondly two of the three dimensions of apathy (reduced goal-directed behaviour, goal-directed cognitive activity, and emotions) must also be present; thirdly there should be identifiable functional impairments attributable to the apathy. Finally, exclusion criteria are specified to exclude symptoms and states that mimic apathy.

[Alarming reduction in the psychiatric treatment capacity of general hospitals in the Netherlands between 1998 and 2006]. / Zorgwekkende afname van psychiatrische behandelcapaciteit in Nederlandse ziekenhuizen in de periode 1998-2006.

BACKGROUND: Psychiatric wards in both general and academic hospitals are ideally suited to provide integrated care to patients with psychiatric and somatic comorbidity. AIM: To draw up an inventory of the capacity of general hospitals in the Netherlands to treat psychiatric patients and to record changes in this capacity during the period 1998-2006. METHOD: Questionnaire. RESULTS: The number of psychiatric wards in general and academic hospitals decreased from 87 in 1998 to 38 in 2006. This decrease was not compensated by an increase in day-treatment facilities, or by the establishment of combined psychiatric-medical units. CONCLUSION: The reduction in the psychiatric treatment capacity of general hospitals is at odds with epidemiological developments and the expected imminent increase in the need for integrated diagnoses and care for patients with both psychiatric and somatic comorbidity.

The nosological position of apathy in clinical practice.

Apathy is increasingly recognised as a common behavioural syndrome in psychiatric disorders, but it is conceptually ill defined. The aim of this study was to examine the concept of apathy as it is currently used in neurology and psychiatry, by review of the literature and conceptual analysis. There is no consensus on diagnostic criteria for apathy as a syndrome. Apathy is mostly defined as a disorder of motivation, and operationalised as diminished goal oriented behaviour and cognition. There is discussion about whether an emotional dimension should form part of the definition of apathy. Abulia is considered a more severe type of apathy, but its nosological position is still unclear. A structured clinical interview and a proposal for diagnostic criteria for apathy in dementia have been recently validated. There are several valid and reliable scales to measure the severity of apathy in patients with psychiatric and neurological disorders. In summary, apathy is increasingly recognised as a common behavioural syndrome associated with neuropsychiatric disorders. There is a need for consensus on diagnostic criteria to facilitate future research. From a nosological perspective, future studies should examine the overlap with other psychiatric and neurodegenerative conditions and further validate specific diagnostic and assessment tools.

Mental health care use in Parkinson's disease: a record linkage study.

BACKGROUND/AIM: Parkinson's disease (PD) is often complicated by psychiatric comorbidity, which is likely to lead to a higher use of mental health care facilities. In addition, psychiatric symptomatology and associated mental health care use may be present even before motor symptoms and PD are diagnosed, as the pathophysiology of PD and its psychiatric consequences are likely to overlap to a degree. This will be reflected in an increasing mental health care use prior to the diagnosis of PD. The aim of this study is to compare the level of mental health care use of PD patients with that of a matched control population, and to assess possible fluctuations in mental health care use in the years surrounding the diagnosis of PD. METHODS: Record linkage study comparing the number of mental health care contacts by PD patients with that of a matched control population. RESULTS: Mental health care use by PD patients already increased before the time of diagnosis of PD, and decreased again after diagnosis. The relative risk for mental health care use was increased from 3 years prior (RR 1.41; 95% CI 1.27-1.57) to 2 years after (RR 1.83; 95% CI 1.63-2.05) diagnosing PD. This increase was higher for women than for men, and higher for younger than older individuals. CONCLUSION: The early pathophysiology of PD is expressed in part as mental health problems, suggesting the possibility of early detection in particular demographic groups and a proactive approach to early intervention for comorbid psychopathology.

[The practice guideline 'Consultation psychiatry' of the Dutch Psychiatric Association for psychiatric consultations in primary care and the hospital]. / Richtlijn 'consultatieve psychiatrie' van de nederlandse vereniging voor psychiatrie voor consulten in de eerste lijn en in de ziekenhuissetting.

Psychiatric consultation in primary care as well as in the hospital is both effective and cost-effective if certain procedures are followed. With the professional guideline 'Consultation psychiatry', the Dutch Psychiatric Association aims at setting a standard for psychiatric consultations in non-psychiatric settings. In general practice, the psychiatric consultation is preferably embedded in 'collaborative care', an integrated care model including the general practitioner and a case manager (usually a nurse), with the consultant psychiatrist being regularly available for clearly defined indications. The psychiatrist should see the patient himself or herself, establish a diagnosis and treatment plan, and provide the general practitioner and the patient with a so-called 'consultation letter', which is then discussed with both. In a general hospital, systematic screening of patients at risk of psychiatric comorbidity can be organised. Early detection of complex patients can further improve the effectiveness of psychiatric consultation. Follow-up contacts and investing in liaison contacts improve adherence to the advice provided.

[What factors are important for the successful implementation of guidelines?]. / Welke factoren zijn belangrijk bij succesvolle implementatie van richtlijnen?

BACKGROUND: The influence of a guideline on clinical practice depends on the extent to which the recommendations in the guideline are acted upon (degree of adherence). AIM: To assess the degree of adherence to recommendations in evidence-based guidelines and to discuss factors that influence adherence. METHOD: Review of the literature. results In several studies the average degree of adherence to recommendations in guidelines was no higher than 60 to 70%, but the percentage differed markedly, depending on the particular guidelines and the individual professionals involved. The degree of adherence was influenced by a large number of factors; these were connected with the guideline itself, the efforts made by the professional organisations, the organisation of care and institutional management, the individual professional, and the patient. The implementation of a guideline actually begins before and during the formulation of the guideline. Mistakes made in the preparatory phase can have a negative effect on adherence and often it may no longer be possible to correct these mistakes at a later stage. CONCLUSION: If the implementation is to be successful, numerous strategies have to be adopted along the way; for instance, the target-group has to be made aware of the guideline and be encouraged to accept it. Guideline development is not an aim in itself, but should be seen as part of a quality circle in which implementation and evaluation also play an important role.

[Consultation-liaison psychiatry and general hospital psychiatry in the Netherlands: on the way to psychosomatic medicine]. / Consultatieve en ziekenhuispsychiatrie in Nederland: op weg naar psychosomatische geneeskunde.

Consultation-liaison psychiatry and general hospital psychiatry have played a major role in promoting the concept of integrated care. New models for care have been developed and policy assurances about the quality of care have been expressed in the form of guidelines and indicators relating to procedure and performance. General hospital psychiatry is playing an increasingly important role in the training of psychiatrists. Due to the ageing population there is greater awareness of the importance of comorbidity and more support for the concept of integrated care. These changes will promote the further development of general hospital psychiatry.

Cognitive behavioural therapy for anxiety disorders in Parkinson's disease: Design of a randomised controlled trial to assess clinical effectiveness and changes in cerebral connectivity.

BACKGROUND: Anxiety disorders occur in up to 35% of patients with Parkinson's disease (PD) and have a negative effect on motor symptoms and quality of life. To date, no clinical trials specifically targeting anxiety in PD patients have been published. OBJECTIVE: To describe the rationale and methodology of a randomised controlled trial (RCT) that aims to study the clinical effectiveness, alterations in brain circuitry, and cost-effectiveness of cognitive behavioural therapy (CBT) for anxiety in PD. METHODS: This study is a prospective, two-centre RCT in which sixty PD patients with anxiety will be randomised to CBT treatment and clinical monitoring (intervention group) or to clinical monitoring only (control group). The CBT module used in this study was specifically developed to address symptoms of anxiety in PD patients. Participants will undergo standardised clinical, cognitive and behavioural assessment at baseline and at 2 follow-up measurements, as well as resting-state fMRI and DTI scanning before and after the intervention. The primary outcome measure is changes in severity of anxiety symptoms. Secondary outcome measures involve long-term changes in anxiety symptoms, changes in functional and structural connectivity between limbic and frontal cortices, and cost-effectiveness of the treatment. The study is registered at the ClinicalTrials.gov database under registration number NCT02648737. CONCLUSION: This study is the first that evaluates both the clinical effectiveness, cost-effectiveness, as well as the biological impact of CBT for anxiety in PD patients that, if proven effective, will hopefully contribute to a better and evidence-based approach for these non-motor symptoms.

Ethics of Deep Brain Stimulation in Adolescent Patients with Refractory Tourette Syndrome: a Systematic Review and Two Case Discussions.

INTRODUCTION: Tourette Syndrome (TS) is a childhood onset disorder characterized by vocal and motor tics and often remits spontaneously during adolescence. For treatment refractory patients, Deep Brain Stimulation (DBS) may be considered. METHODS AND RESULTS: We discuss ethical problems encountered in two adolescent TS patients treated with DBS and systematically review the literature on the topic. Following surgery one patient experienced side effects without sufficient therapeutic effects and the stimulator was turned off. After a second series of behavioural treatment, he experienced a tic reduction of more than 50%. The second patient went through a period of behavioural disturbances that interfered with optimal programming, but eventually experienced a 70% tic reduction. Sixteen DBS surgeries in adolescent TS patients have been reported, none of which pays attention to ethical aspects. DISCUSSION: Specific ethical issues arise in adolescent TS patients undergoing DBS relating both to clinical practice as well as to research. Attention should be paid to selecting patients fairly, thorough examination and weighing of risks and benefits, protecting the health of children and adolescents receiving DBS, special issues concerning patient's autonomy, and the normative impact of quality of life. In research, registration of all TS cases in a central database covering a range of standardized information will facilitate further development of DBS for this indication. CONCLUSION: Clinical practice should be accompanied by ongoing ethical reflection, preferably covering not only theoretical thought but providing also insights in the views and perspectives of those concerned, that is patients, family members and professionals.