Does the mode of care delivery affect therapeutic alliance, patient care satisfaction or patient reported outcomes? Psycho-oncological care evaluation data collected during the COVID-19 pandemic.

PURPOSE: Since the COVID-19 pandemic, psycho-oncological care has increasingly been provided virtually and/or telephonically. We examined whether patients' therapeutic alliance (TA) - an essential processual outcome - differs due to altered modes of care delivery (MOCD) and assessed, if MOCD impacts patients' care satisfaction and patient reported outcomes. METHODS: Survey and documentation data from newly diagnosed cancer patients that were cared for in the new form of care 'isPO' in Germany, were analyzed. Patients were surveyed after completing the one-year psycho-oncological care program. MOCD was operationalized by the ratio of patients' face-to-face, telephonic or video-based consultations to all their consultations. Regression analyzes were conducted to determine a possible relationship between MOCD and TA, between MOCD and patients' care satisfaction ('subjective effectiveness' and 'satisfaction and needs-orientation') and patient reported outcomes (anxiety and depression, sense of coherence, global health status). FINDINGS: MOCD does not significantly influence TA. Regression models on the possible effect on subjective effectiveness and satisfaction and needs-orientation do not show statistical significance with only MOCD as the predictor. MOCD does not predict any of the patient reported outcomes. CONCLUSIONS: During the pandemic, neither TA, care satisfaction nor patient reported outcomes were affected by the MOCD in the new form of care 'isPO'. Therefore, the MOCD didn't negatively affect quality of care, which indicates that telephone or video consultations seem to be useful alternatives for psycho-oncological care in Germany.

Association between lesion location and sensorimotor rhythms in stroke - a systematic review with narrative synthesis.

BACKGROUND: Stroke causes alterations in the sensorimotor rhythms (SMRs) of the brain. However, little is known about the influence of lesion location on the SMRs. Understanding this relationship is relevant for the use of SMRs in assistive and rehabilitative therapies, such as Brain-Computer Interfaces (BCIs).. METHODS: We reviewed current evidence on the association between stroke lesion location and SMRs through systematically searching PubMed and Embase and generated a narrative synthesis of findings. RESULTS: We included 12 articles reporting on 161 patients. In resting-state studies, cortical and pontine damage were related to an overall decrease in alpha (∼8-12 Hz) and increase in delta (∼1-4 Hz) power. In movement paradigm studies, attenuated alpha and beta (∼15-25 Hz) event-related desynchronization (ERD) was shown in stroke patients during (attempted) paretic hand movement, compared to controls. Stronger reductions in alpha and beta ERD in the ipsilesional, compared to contralesional hemisphere, were observed for cortical lesions. Subcortical stroke was found to affect bilateral ERD and ERS, but results were highly variable. CONCLUSIONS: Findings suggest a link between stroke lesion location and SMR alterations, but heterogeneity across studies and limited lesion location descriptions precluded a meta-analysis. SIGNIFICANCE: Future research would benefit from more uniformly defined outcome measures, homogeneous methodologies, and improved lesion location reporting.

Patients' perspectives on the quality of care of a new complex psycho-oncological care programme in Germany - external mixed methods evaluation results.

BACKGROUND: Guideline-compliant provision of psycho-oncological (PO) care is still challenging in Germany. Hence, a new care programme, called integrated cross-sectoral psycho-oncology (isPO), was implemented to improve the integration of needs-oriented PO care. Quality of care (QoC) was externally evaluated from the patient's perspective. We aim to gain insight into patients' experiences with isPO and how their assessment affects relevant patient-reported outcomes (anxiety and depression, health status, and work ability). METHODS: An explanatory, sequential mixed-methods design was applied. Patients were surveyed twice during their 1-year care trajectory: after 3 (T1) and 12 (T2) months. Data sets were matched using pseudonyms. Care documentation data, including sociodemographic characteristics and the primary outcome variable (anxiety and depression), were matched. In the survey, patients rated their satisfaction with respective isPO service providers and the programme in general (QoC). Health status (EORTC-QLQ-C30) and work ability (WAS) were measured. Descriptive analyses and t-tests for dependent samples were conducted to assess changes in outcome variables over time. Linear regression analyses were conducted to assess whether care satisfaction predicted outcome variables. Patients who completed their isPO care trajectory were asked to participate in semi-structured telephone interviews to share their experiences. Purposeful sampling was applied. All 23 interviews were audiotaped, transcribed, and analysed via content-structuring method. RESULTS: Patients reported medium-to-high satisfaction with their isPO care. All patient-related outcomes significantly improved over time and QoC measures predicted those outcomes. Needs orientation (e.g., care intensity or mode of delivery) was perceived as essential for high QoC, and outpatient care with fixed contact persons as highly important for care continuity. Furthermore, patients identified programme optimisation needs, such as period of care or extension of care to relatives. CONCLUSIONS: Patients assessed the isPO programme's QoC positively. They identified facilitators for QoC and optimisation needs. Therefore, data on QoC can function as an indicator for a programme's feasibility and maturity within care reality. As patients' care satisfaction positively influences important patient-related outcomes, it may be routinely considered for quality management. Based on patients' perspectives, isPO seems to be recommendable for routine psycho-oncological care in Germany, if ongoing programme optimisation within structured quality management is guaranteed. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (No. DRKS00015326) on 30.10.2018.

The impact of COVID-19 on the interpretation of psycho-oncological support trial results: a quasi-experimental approach using the data from the new form of care "Integrated cross-sectoral psycho-oncology (nFC-isPO)".

OBJECTIVE: In addition to the common difficulties of ongoing trials, the COVID-19 pandemic posed several challenges to scientists worldwide and created an additional burden for vulnerable patient groups. In the nFC-isPO of individualised treatment for anxiety and depression in newly diagnosed patients with cancer caregivers (e.g. psycho-oncologists) reported elevated HADS scores in newly enrolled patients after the outbreak of the COVID-19 pandemic. Accordingly, the question arises whether the pandemic affected HADS scores. Therefore, stratified analyses by the time of enrolment (T1) were performed for patients with 12 months of care (T3). METHODS: Patients with 12 months of care (N = 1,140) were analysed. A comparison within the regression discontinuity design according to the time points at which patients completed the baseline (T1) HADS questionnaire was conducted to examine differences between patients recruited before Q2/2020 (pre-pandemic) and after the coronavirus outbreak. Furthermore, mean HADS scores at T1 and T3 for all quarters during the study were compared. RESULTS: Mean T1 and T3 HADS scores of patients with cancer during the pandemic are only slightly higher than those of the pre-pandemic group. No significant treatment effect was observed in either the pre-pandemic (p = 0.5495, Late = 1.7711) or the post-pandemic group (p = 0.9098, LATE=-0.2933). In contrast, the average local treatment effect in the post-pandemic group suggests a minimal decrease in HADS score in the predefined range and thus a positive treatment effect for isPO. Comparison of mean HADS scores at T1 and T3 did not show a large increase by pandemic-related timepoints, however, a decrease of approximately 2-3 points over each quarter at 12 months compared to baseline is observed. CONCLUSION: The existing nFC-isPO care is resilient to crisis and may counteract external influences such as the Corona pandemic. Accordingly, the pandemic had little influence on the fears of patients with cancer in the nFC-isPO. This emphasises that psycho-oncology is vital for the reduction of stress, anxiety and depression in patients with cancer. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Registry on 30 October 2018 under the ID "DRKS00015326".

Boosting brain-computer interfaces with functional electrical stimulation: potential applications in people with locked-in syndrome.

Individuals with a locked-in state live with severe whole-body paralysis that limits their ability to communicate with family and loved ones. Recent advances in brain-computer interface (BCI) technology have presented a potential alternative for these people to communicate by detecting neural activity associated with attempted hand or speech movements and translating the decoded intended movements to a control signal for a computer. A technique that could potentially enrich the communication capacity of BCIs is functional electrical stimulation (FES) of paralyzed limbs and face to restore body and facial movements of paralyzed individuals, allowing to add body language and facial expression to communication BCI utterances. Here, we review the current state of the art of existing BCI and FES work in people with paralysis of body and face and propose that a combined BCI-FES approach, which has already proved successful in several applications in stroke and spinal cord injury, can provide a novel promising mode of communication for locked-in individuals.

Conducting a prospective evaluation of the development of a complex psycho-oncological care programme (isPO) in Germany.

BACKGROUND: Evaluating the development phase of a complex intervention programme can be challenging. A prospective evaluation approach is presented based on the example of the new complex psycho-oncological care programme isPO (integrated, cross-sectoral Psycho-Oncology). Prior to programme implementation, we examined (1) if isPO was developed as intended, and (2) if it was relevant and transferable into the newly developed psycho-oncological care networks in North-Rhine Westphalia, Germany. Further, we investigated which implementation facilitators and barriers were anticipated and which implementation strategies were planned by the programme designers (multidisciplinary professionals and cancer supporting organizations who developed the isPO programme components and the networks). METHODS: A mixed-methods approach was applied. Qualitative data were collected by quarterly progress reports, interviews and a focus group with the programme designers. Evaluation criteria for document analyses of the quarterly progress reports were developed and applied. Content analysis was applied for analysing interviews and focus group. Quantitative data were gained from evaluating the programme training for the isPO service providers by short written questionnaires that were analysed descriptively. RESULTS: An implementable prototype of the isPO programme has been developed within 15 months, however no piloting was conducted. The programme's complexity proved to be challenging with regard to coordination and communication of the numerous programme designers. This was intensified by existing interdependencies between the designers. Further, there was little communication and participation between the programme designers and the prospective users (patients and service providers). Due to these challenges, only context-unspecific implementation strategies were planned. CONCLUSION: The required resources for developing a new complex care programme and the need of a mature implementation strategy should be sufficiently addressed. Programmes may benefit from prospective evaluation by gaining insightful knowledge concerning the programme's maturity and anticipating implementation facilitators and barriers. A mixed-methods evaluation design was crucial for achieving profound insight into the development process. TRIAL REGISTRATION: The study has been registered in the German Clinical Trials Register (No. DRKS00015326 ) on 30.10.2018.

Integrated, cross-sectoral psycho-oncology (isPO): a new form of care for newly diagnosed cancer patients in Germany.

BACKGROUND: The annual incidence of new cancer cases has been increasing worldwide for many years, and is likely to continue to rise. In Germany, the number of new cancer cases is expected to increase by 20% until 2030. Half of all cancer patients experience significant emotional and psychosocial distress along the continuum of their disease, treatment, and aftercare, and also as long-term survivors. Consequently, in many countries, psycho-oncological programs have been developed to address this added burden at both the individual and population level. These programs promote the active engagement of patients in their cancer therapy, aftercare and survivorship planning and aim to improve the patients' quality of life. In Germany, the "new form of care isPO" ("nFC-isPO"; integrated, cross-sectoral psycho-oncology/integrierte, sektorenübergreifende Psycho-Onkologie) is currently being developed, implemented and evaluated. This approach strives to accomplish the goals devised in the National Cancer Plan by providing psycho-oncological care to all cancer patients according to their individual healthcare needs. The term "new form of care" is defined by the Innovation Fund (IF) of Germany's Federal Joint Committee as "a structured and legally binding cooperation between different professional groups and/or institutions in medical and non-medical care". The nFC-isPO is part of the isPO project funded by the IF. It is implemented in four local cancer centres and is currently undergoing a continuous quality improvement process. As part of the isPO project the nFC-isPO is being evaluated by an independent institution: the Institute for Medical Sociology, Health Services Research, and Rehabilitation Science (IMVR), University of Cologne, Germany. The four-year isPO project was selected by the IF to be eligible for funding because it meets the requirements of the federal government's National Cancer Plan (NCP), in particular, the "further development of the oncological care structures and quality assurance" in the psycho-oncological domain. An independent evaluation is required by the IF to verify if the new form of care leads to an improvement in cross-sectoral care and to explore its potential for permanent integration into the German health care system. METHODS: The nFC-isPO consists of six components: a concept of care (C1), care pathways (C2), a psycho-oncological care network (C3), a care process organization plan (C4), an IT-supported documentation and assistance system (C5) and a quality management system (C6). The two components concept of care (C1) and care pathways (C2) represent the isPO clinical care program, according to which the individual cancer patients are offered psycho-oncological services within a period of 12 months after program enrolment following the diagnosis of cancer. The remaining components (C3-C6) represent the formal-administrative aspects of the nFC-isPO that are intended to meet the legally binding requirements of patient care in the German health care system. With the aim of systematic development of the nFC-isPO while at the same time enabling the external evaluators to examine its quality, effectiveness and efficiency under conditions of routine care, the project partners took into consideration approaches from translational psycho-oncology, practice-based health care research and program theory. In order to develop a structured, population-based isPO care program, reference was made to a specific program theory, to the stepped-care approach, and also to evidence-based guideline recommendations. RESULTS: The basic version, nFC-isPO, was created over the first year after the start of the isPO project in October 2017, and has since been subject to a continuous quality improvement process. In 2019, the nFC-isPO was implemented at four local psycho-oncological care networks in the federal state North Rhine-Westphalia, in Germany. The legal basis of the implementation is a contract for "special care" with the German statutory health insurance funds according to state law (§ 140a SCB V; Social Code Book V for the statutory health insurance funds). Besides the accompanying external evaluation by the IMVR, the nFC-isPO is subjected to quarterly internal and cross-network quality assurance and improvement measures (internal evaluation) in order to ensure continuous quality improvement process. These quality management measures are developed and tested in the isPO project and are to be retained in order to ensure the sustainability of the quality of nFC-isPO for later dissemination into the German health care system. DISCUSSION: Demands on quality, effectiveness and cost-effectiveness of in the German health care system are increasing, whereas financial resources are declining, especially for psychosocial services. At the same time, knowledge about evidence-based screening, assessment and intervention in cancer patients and about the provision of psychosocial oncological services is growing continuously. Due to the legal framework of the statutory health insurance in Germany, it has taken years to put sound psycho-oncological findings from research into practice. Ensuring the adequate and sustainable financing of a needs-oriented, psycho-oncological care approach for all newly diagnosed cancer patients, as required by the NCP, may still require many additional years. The aim of the isPO project is to develop a new form of psycho-oncological care for the individual and the population suffering from cancer, and to provide those responsible for German health policy with a sound basis for decision-making on the timely dissemination of psycho-oncological services in the German health care system. TRIAL REGISTRATION: The study was pre-registered at the German Clinical Trials Register (https://www.drks.de/DRKS00015326) under the following trial registration number: DRKS00015326 ; Date of registration: October 30, 2018.

Mental disorders and utilization of mental health services in newly diagnosed cancer patients: An analysis of German health insurance claims data.

OBJECTIVE: People with cancer are often confronted not only with the burdens of medical treatment but also with psychological strain, which can lead to mental disorders (MD). To date, the prevalence of MD in newly diagnosed cancer patients and their utilization of mental health services (MHS) are mainly estimated through data of primary studies than considering healthcare-related claims data. METHODS: Statutory health insurance claims data of the AOK/KV Hesse from 2011 to 2014 was analyzed. The number of incident cancer patients with MD and the utilization of MHS within the period of the quarter of incident cancer diagnosis and three subsequent quarters were determined. For incident cancer patients with an incident MD, the predictive values of sex, age group, and tumor entity on the documentation of MD diagnosis and utilization were investigated. RESULTS: The 12-month prevalence of MD in incident cancer patients was 31.1% for depression, 11.2% for anxiety disorders, and 9.2% for post-traumatic stress/adjustment disorder (PTSD/AD). Of these, 65.9% received outpatient psychotherapy and 43.0% at least one psychopharmacological drug prescription. Men had a significantly lower chance of receiving an MD diagnosis following cancer. CONCLUSIONS: The prevalence of MD observed was higher for depression and lower for PTSD/AD compared to meta-analyses of clinical trials. Male cancer patients had a lower chance of receiving an MD diagnosis than females, which coincides with existing results.

Randomised controlled trial of escitalopram for cervical dystonia with dystonic jerks/tremor.

OBJECTIVE: Trials for additional or alternative treatments for cervical dystonia (CD) are scarce since the introduction of botulinum neurotoxin (BoNT). We performed the first trial to investigate whether dystonic jerks/tremor in patients with CD respond to the selective serotonin reuptake inhibitor (SSRI) escitalopram. METHODS: In a randomised, double-blind, crossover trial, patients with CD received escitalopram and placebo for 6 weeks. Treatment with BoNT was continued, and scores on rating scales regarding dystonia, psychiatric symptoms and quality of life (QoL) were compared. Primary endpoint was the proportion of patients that improved at least one point on the Clinical Global Impression Scale for jerks/tremor scored by independent physicians with experience in movement disorders. RESULTS: Fifty-threepatients were included. In the escitalopram period, 14/49 patients (29%) improved on severity of jerks/tremor versus 11/48 patients (23%) in the placebo period (P=0.77). There were no significant differences between baseline and after treatment with escitalopram or placebo on severity of dystonia or jerks/tremor. Psychiatric symptoms and QoL improved significantly in both periods compared with baseline. There were no significant differences between treatment with escitalopram and placebo for dystonia, psychiatric or QoL rating scales. During treatment with escitalopram, patients experienced slightly more adverse events, but no serious adverse events occurred. CONCLUSION: In this innovative trial, no add-on effect of escitalopram for treatment of CD with jerks was found on motor or psychiatric symptoms. However, we also did not find a reason to withhold patients treatment with SSRIs for depression and anxiety, which are common in dystonia. TRIAL REGISTRATION NUMBER: NTR2178.

Perceptions of free will in obsessive-compulsive disorder: a quantitative analysis.

BACKGROUND: The aim of this study was to explore perceptions of free will in the repetitive behaviors of patients with obsessive-compulsive disorder (OCD) and to explore their relation with core clinical characteristics. METHODS: Experiences of free will were assessed with the Symptomatology And Perceived Free will rating scale (SAPF) in 295 subjects with a lifetime diagnosis of OCD. Patients' scores on the SAPF were subjected to an explorative principal axis factor analysis (PAF). Factor scores were regressed on five OCD symptom dimensions and on seven clinical variables: illness duration, severity of OCD, insight, anxiety and depression, suicidal ideation and quality of life. RESULTS: The PAF revealed three factors: the perceived ability to control and change one's course of action when faced with an obsession or compulsion (the "alternative possibilities" factor); the experience of obsessions or compulsions as intentional (the "intentionality" factor); and the experience of being the source or owner of the obsessions or compulsions (the "ownership" factor). Lower scores on the "alternative possibilities" factor were associated with lower scores on the washing dimension (ß = 0.237, p = 0.004) and higher scores on the precision dimension (ß = - 0.190, p = 0.025) and independently associated with longer illness duration (ß = - 0.134, p = 0.039), higher illness severity (ß = - 0.298, p < 0.001) and lower quality of life (ß = 0.172, p = 0.046). Lower scores on the "intentionality" factor were independently associated with lower quality of life (ß = 0.233, p = 0.027). Higher scores on the "ownership" factor were associated with higher scores on the precision dimension (ß = 0.207, p = 0.023) and independently associated with poorer insight (ß = 0.170, p = 0.045). CONCLUSIONS: The most notable finding of this study is that a diminished experience of free will in OCD is associated with core clinical characteristics: illness duration and severity, insight and quality of life.

Which patients with epilepsy are at risk for psychogenic nonepileptic seizures (PNES)? A multicenter case-control study.

OBJECTIVE: We sought to examine the clinical and electrographic differences between patients with combined epileptic (ES) and psychogenic nonepileptic seizures (PNES) and age- and gender-matched patients with ES-only and PNES-only. METHODS: Data from 138 patients (105 women [77%]), including 46 with PNES/ES (39±12years), 46 with PNES-only (39±11years), and 46 with ES-only (39±11years), were compared using logistic regression analysis after adjusting for clustering effect. RESULTS: In the cohort with PNES/ES, ES antedated PNES in 28 patients (70%) and occurred simultaneously in 11 (27.5%), while PNES were the initial presentation in only 1 case (2.5%); disease duration was undetermined in 6. Compared with those with ES-only, patients with PNES/ES had higher depression and anxiety scores, shorter-duration electrographic seizures, less ES absence/staring semiology (all p≤0.01), and more ES arising in the right hemisphere, both in isolation and in combination with contralateral brain regions (61% vs. 41%; p=0.024, adjusted for anxiety and depression) and tended to have less ES arising in the left temporal lobe (13% vs. 28%; p=0.054). Compared with those with PNES-only, patients with PNES/ES tended to show fewer right-hemibody PNES events (7% vs. 23%; p=0.054) and more myoclonic semiology (10% vs. 2%; p=0.073). CONCLUSIONS: Right-hemispheric electrographic seizures may be more common among patients with ES who develop comorbid PNES, in agreement with prior neurobiological studies on functional neurological disorders.

RELN rare variants in myoclonus-dystonia.

BACKGROUND: Myoclonus-dystonia (M-D) is a hyperkinetic movement disorder with predominant myoclonic symptoms combined with dystonia of the upper part of the body. A proportion of M-D cases are caused by mutations in the epsilon-sarcoglycan gene. In remaining M-D patients, no genetic factor has been established, indicating genetic heterogeneity. METHODS: Patients were included in a prospective clinical database and recruited from referral centers and general neurology clinics in The Netherlands. To investigate new genetic causal factors in M-D syndrome, we performed homozygosity mapping combined with exome sequencing in a three-generation M-D family and genetically screened 24 additional patients with M-D. RESULTS: We found co-segregation of the rare missense variant Thr1904Met in the RELN gene. By additional screening of an M-D cohort, we identified co-segregation of RELN variants in two families (Thr1904Met, Ile1217Met) and identified two sporadic RELN mutation carriers (Pro1703Arg, Leu411Ile). Taken together, five of 25 SGCE-negative M-D patients carried RELN rare missense variants. CONCLUSION: We propose that RELN mutations contribute to the genetic heterogeneity of M-D. Reelin is a large secreted glycoprotein that plays essential roles in the cytoarchitecture of laminated brain structures and modulation of synaptic transmission and plasticity.

Seizure Outcome After Intraoperative Electrocorticography-Tailored Epilepsy Surgery: A Systematic Review and Meta-Analysis.

BACKGROUND AND OBJECTIVES: Tailoring epilepsy surgery using intraoperative electrocorticography (ioECoG) has been debated, and modest number of epilepsy surgery centers apply this diagnostic method. We assessed the current evidence to use ioECoG-tailored epilepsy surgery for improving postsurgical outcome. METHODS: PubMed and Embase were searched for original studies reporting on ≥10 cases who underwent ioECoG-tailored surgery for epilepsy, with a follow-up of at least 6 months. We used a random-effects model to calculate the overall rate of patients achieving favorable seizure outcome (FSO), defined as Engel class I, ILAE class 1, or seizure-free status. Meta-regression was used to investigate potential sources of heterogeneity. We calculated the odds ratio (OR) for estimating variables on FSO:ioECoG vs non-ioECoG-tailored surgery (if included studies contained patients with non-ioECoG-tailored surgery), ioECoG-tailored epilepsy surgery in children vs adults, temporal (TL) vs extratemporal lobe (eTL), MRI-positive vs MRI-negative, and complete vs incomplete resection of tissue that generated interictal epileptiform discharges (IEDs). A Bayesian network meta-analysis was conducted for underlying pathologies. We assessed the evidence certainty using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE). RESULTS: Eighty-three studies (82 observational studies, 1 trial) comprising 3,631 patients with ioECoG-tailored surgery were included. The overall pooled rate of patients who attained FSO after ioECoG-tailored surgery was 74% (95% CI 71-77) with significant heterogeneity, which was predominantly attributed to pathologies and seizure outcome classifications. Twenty-two studies contained non-ioECoG-tailored surgeries. IoECoG-tailored surgeries reached a higher rate of FSO than non-ioECoG-tailored surgeries (OR 2.10 [95% CI 1.37-3.24]; p < 0.01; very low certainty). Complete resection of tissue that displayed IEDs in ioECoG predicted FSO better compared with incomplete resection (OR 3.04 [1.76-5.25]; p < 0.01; low certainty). We found insignificant difference in FSO after ioECoG-tailored surgery in children vs adults, TL vs eTL, or MRI-positive vs MRI-negative. The network meta-analysis showed that the odds of FSO was lower for malformations of cortical development than for tumors (OR 0.47 95% credible interval 0.25-0.87). DISCUSSION: Although limited by low-quality evidence, our meta-analysis shows a relatively good surgical outcome (74% FSO) after epilepsy surgery with ioECoG, especially in tumors, with better outcome for ioECoG-tailored surgeries in studies describing both and better outcome after complete removal of IED areas.

The eye of the beholder: inter-rater agreement among experts on psychogenic jerky movement disorders.

OBJECTIVE: The current criteria for conversion disorder in the Diagnostic and Statistical Manual of Mental Disorders rely on the assumption that neurological disorders can be distinguished from conversion disorders through clinical assessment. This study aims to assess inter-rater agreement among clinicians with experience in the diagnosis of various hyperkinetic jerky movements, including psychogenic jerks. METHODS: 60 patients with psychogenic jerks, myoclonus or tics were rated by international experts using a standardised survey resembling daily clinical practice. The survey included the following diagnostic steps: a short video offering a visual impression of the patients and their jerky movements, medical history, neurological examination (on video), additional investigations and the findings of a standardised psychiatric interview. The diagnosis and diagnostic certainty were scored after each step. RESULTS: After all clinical information was given, moderate inter-rater agreement was reached (κ=0.56±0.1) with absolute agreement (100%) of experts on the diagnosis in 12 (20%) patients and reasonable agreement (>75%) in 43 (72%) patients. Psychiatric evaluation did not contribute to inter-rater agreement or diagnostic certainty. CONCLUSIONS: Our findings illustrate the fact that experienced movement disorder specialists moderately agree on the clinical diagnosis of jerky movements. Clinical assessment, especially by a team of clinicians in challenging individual cases, might improve diagnostic agreement.

Neuropsychological profile of psychogenic jerky movement disorders: importance of evaluating non-credible cognitive performance and psychopathology.

BACKGROUND: Psychogenic movement disorders are disorders of movements that cannot be explained by a known neurological disorder and are assumed to be associated with psychiatric symptoms such as depression and anxiety. OBJECTIVE: To examine the neuropsychological profile of patients with psychogenic movement disorders. METHODS: We examined cognitive functioning using neuropsychological tests in 26 patients with clinically established psychogenic jerky movement disorders (PMD). We included 16 patients with Gilles de la Tourette syndrome (GTS) who served as a patient control group, in addition to 22 healthy control subjects. Non-credible test performance was detected using a Symptom Validity Test (SVT). Psychopathology was also assessed. RESULTS: Apart from a worse performance on a verbal memory task, no evidence of neuropsychological impairments was found in our PMD sample. Interestingly however, patients with PMD reported more cognitive complaints in daily life and performed worse on the SVT than the two other groups. Patients with GTS did not report, or show, cognitive impairments. In patients with PMD, we found associations between verbal learning, SVT performance and severity of depression and anxiety complaints. CONCLUSIONS: We conclude that some patients with PMD show non-credible cognitive symptoms. In contrast, no evident cognitive impairments were present in patients with PMD or GTS. Our study underlines the importance of assessment of non-credible response in patients with PMD. Additionally, non-credible response might aid in the differentiation of PMD from other movement disorders.

Cancer patients' experiences and preferences when receiving bad news: a qualitative study.

PURPOSE: Receiving a cancer diagnosis significantly impacts patients' lives, and how the bad news is delivered influences patients' trajectory, psychosocial adjustment and openness to psycho-oncological support. We explored how patients' experiences, reactions and preferences were when receiving the news and which optimization recommendations can be made. METHODS: We conducted an exploratory qualitative study with patients who enrolled in the new integrated cross-sectoral psycho-oncological care programme 'isPO', being enrolled 12 months post-diagnosis. Data on the main issue (i.e. perception of the moment when the diagnosis is received) were collected via telephone interviews that were fully audiotaped and transcribed. Two independent coders conducted inductive content analyses using MAXQDA. RESULTS: Out of 38 approached patients, 23 cancer patients with 13 different tumour entities participated. They had a mean age of 54.2 (SD 16.2); n = 17 (74%) were female. Three major themes with 14 corresponding subthemes emerged: (1) patients' experiences with the bad news delivery, including setting, mode, preparation and perceived needs; (2) patients' reactions to the bad news, such as shock, fear and helplessness, disbelief and denial, anger and feeling of injustice, thankfulness and depression; and (3) patients' receiving preferences, including psycho-oncological support, addressing informational needs, needs-driven comprehensive support and a competent multidisciplinary support team. CONCLUSIONS: The quality of bad news delivery and addressing patients' needs should be strongly considered by physicians. We recommend integrating patients' perspective on the quality management processes of breaking bad news. For providing needs-centred high-quality care, applying existing guidelines and acquiring patient-centred communication skills are central.

Integrating one-to-one peer support into psycho-oncological care in Germany: multi-perspective, mixed-methods evaluation of the isPO onco-guide service.

PURPOSE: One-to-one peer supporters called isPO onco-guides (isPO OGs) are an integral part of the new German psycho-oncological form of care 'integrated, cross-sectoral Psycho-Oncology' (isPO), additionally to professional care. The isPO OGs are cancer survivors with experiential knowledge, offering information on local support services and answering questions 'all around cancer' to newly diagnosed cancer patients. We aimed to evaluate the isPO OG service from three perspectives: patients, isPO OGs, and professional service providers. METHODS: A mixed-methods approach was pursued. We conducted interviews and focus groups with the three person groups, and applied qualitative content analysis on the reported resources, processes and outcomes regarding the isPO OG service. Relations with patients' utilisation and isPO OGs' work satisfaction were identified with regression and correlation analyses of questionnaire and isPO care data. We compared isPO care networks (CN) with X2-tests or ANOVA. Qualitative and quantitative results were integrated during interpretation phase. RESULTS: Qualitatively, the three person groups agreed on the benefits of the isPO OG service. The implementation's maturity differed between the CN concerning established processes and resource availability. Attitudes of professional service providers appeared to be crucial for patients' utilisation of the isPO OG service. Quantitative results emphasised the differences between the CN. CONCLUSION: Beyond differences in the CN, the isPO OG service has two psychosocial benefits: providing relevant, reliable, and understandable information; and offering the encouraging example that surviving and living with cancer is possible. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (No. DRKS00015326) on 30.10.2018.

Current state of research on the clinical benefits of herbal medicines for non-life-threatening ailments.

Herbal medicines are becoming increasingly popular among patients because they are well tolerated and do not exert severe side effects. Nevertheless, they receive little consideration in therapeutic settings. The present article reviews the current state of research on the clinical benefits of herbal medicines on five indication groups, psychosomatic disorders, gynecological complaints, gastrointestinal disorders, urinary and upper respiratory tract infections. The study search was based on the database PubMed and concentrated on herbal medicines legally approved in Europe. After applying defined inclusion and exclusion criteria, 141 articles were selected: 59 for psychosomatic disorders (100% randomized controlled trials; RCTs), 20 for gynecological complaints (56% RCTs), 19 for gastrointestinal disorders (68% RCTs), 16 for urinary tract infections (UTI, 63% RCTs) and 24 for upper respiratory tract infections (URTI) (79% RCTs). For the majority of the studies, therapeutic benefits were evaluated by patient reported outcome measures (PROs). For psychosomatic disorders, gynecological complaints and URTI more than 80% of the study outcomes were positive, whereas the clinical benefit of herbal medicines for the treatment of UTI and gastrointestinal disorders was lower with 55%. The critical appraisal of the articles shows that there is a lack of high-quality studies and, with regard to gastrointestinal disorders, the clinical benefits of herbal medicines as a stand-alone form of therapy are unclear. According to the current state of knowledge, scientific evidence has still to be improved to allow integration of herbal medicines into guidelines and standard treatment regimens for the indications reviewed here. In addition to clinical data, real world data and outcome measures can add significant value to pave the way for herbal medicines into future therapeutic applications.

Resective Epilepsy Surgery, QUality of life and Economic evaluation (RESQUE): the change in quality of life after resective epilepsy surgery-protocol for a multicentre, prospective cohort study.

INTRODUCTION: Resective epilepsy surgery is often seen as a last resort when treating drug-resistant epilepsy. Positive results on quality of life (QoL) and economic benefits after surgery argue for a less restrictive attitude towards epilepsy surgery for drug-resistant epilepsy. QoL and economic benefits are country-dependent. The objective of the Resective Epilepsy Surgery, QUality of life and Economic evaluation (RESQUE) trial is to evaluate the change in QoL before and after epilepsy surgery in Dutch people with drug-resistant epilepsy. The results will form part of an economic evaluation of epilepsy surgery in people with epilepsy (PWE) in The Netherlands. METHODS AND ANALYSIS: A longitudinal prospective multicentre cohort study involving 100 PWE undergoing epilepsy surgery between 2019 and 2025 is being performed in three Dutch academic hospitals. Excluded are PWE who have a lower level of intelligence (TIQ<70) or who do not master the Dutch language. Before surgery and 3, 6, 12 and 24 months after surgery, PWE receive validated online questionnaires (QOLIE-31, EQ-5D, iMCQ and iPCQ) on QoL, cost of care, expectations and satisfaction. Primary outcome is the change in QoL. Secondary outcomes are change in generic QoL, seizure reduction (International League Against Epilepsy Outcome Classification), medical consumption, productivity, the correlation between QoL and seizure reduction and expectation of and satisfaction with the surgery. ETHICS AND DISSEMINATION: The study design has been approved by the Medical Ethics Review Committee (METC) of Maastricht UMC+ (2019-1134) and the Amsterdam UMC (vu). At the time of writing, UMC Utrecht is in the process of considering approval. The study will be conducted according to the Dutch Medical Research Involving Human Subjects Act and the Declaration of Helsinki. The results will be publicly disclosed and submitted for publication in international peer-reviewed scientific journals. There is no veto on publication by the involved parties. TRIAL REGISTRATION: NL8278; Pre-results.

The bereitschaftspotential in jerky movement disorders.

OBJECTIVE: To assess the diagnostic value of the bereitschaftspotential (BP) in jerky movement disorders. METHODS: A cross-sectional case series of 48 patients with psychogenic jerks, Gilles de la Tourette syndrome (GTS) or myoclonus was investigated. We measured the BP prior to the spontaneous jerk and voluntary wrist extension. In addition, the various jerky movements were imitated by 25 healthy subjects. RESULTS: For patients with psychogenic jerks, we observed significantly more BPs; however, the BP was not identified prior to self-paced wrist extensions in 59% of cases. In contrast, none of the patients with the clinical diagnosis of myoclonus had a BP prior to their jerks but did have a BP prior to intentional wrist extension. In GTS, we demonstrated a BP in a minority of cases preceding motor tics and with a shorter duration in comparison with patients with psychogenic jerks. In healthy control subjects, a BP was found preceding all movements in all cases. The absence of a BP prior to intended wrist extension had a sensitivity of 0.59, specificity of 0.98 and positive likelihood ratio of 25 for the diagnosis of psychogenic jerks. CONCLUSIONS: We demonstrate that the BP can aid in the differentiation of jerky movements. Patients with psychogenic jerks significantly more often have a BP prior to their jerks and with a significantly earlier onset compared with GTS patients. A novel finding of our study is the absence of a BP prior to intentional movements for patients with psychogenic jerks. Validation in a prospective cohort is needed.