Recent literature suggests that taking into consideration and evaluating preoperative expectations of Parkinson's disease (PD) patients candidates to deep brain stimulation (DBS), can contribute to ...treatment effectiveness. However, few validated instruments investigating preoperative expectations are available. We present the development and validation of the DBS-PS (Deep Brain Stimulation – Perception Scale).
The DBS-PS is an 11 questions self-administered scale, with answers rated on a 10-point Likert scale (1 completely false, 10 completely true). Items were generated on the basis of patient's interviews analyzed by an expert group and reached consensus. The scale is divided into three domains: expectations for PD, expectations for social-life and leisure, expectations for intimate life. Exploratory factor analysis (EFA) completed by item response theory (IRT) analysis was conducted to validate the theoretical structure of the DBS-PS.
64 PD patients aged 59.18 (SD = 5.74) years with PD diagnosed since 9.36 (SD = 4.09) years completed the DBS-PS preoperatively. EFA confirmed a 3 factors scale structure (eigenvalue >1) explaining 69% of variance (factor 1: 43%; factor 2: 17%; factor 3: 9%). Reliability (Cronbach's α: 0.714 for factor 1, 0.781 for factor 2, 0.889 for factor 3) and discriminant validity (Pearson coefficient r < 0.50) were satisfactory. IRT showed good model fit, preserved unidimensionality, but some local dependences were observed.
The DBS-PS shows satisfactory psychometric properties. It is easy to administer in routine practice with preoperative PD patients. It constitutes an interesting basis for cognitive restructuring before neurosurgery, by highlighting dysfunctional cognitions and measuring the benefits of cognitive restructuring therapy.
•DBS expectations' assessment is important in preoperative management of parkinsonian.•DBS-PS is a specific tool with good psychometric properties to assess expectations.•DBS-PS is suitable for the evaluation of PD patients' preoperative expectations.•DBS-PS helps adjusting preoperative therapeutic education and cognitive restructuring.•DBS-PS can be replicated at different times during patient's operative follow-up.
•Depression, anxiety, and alexithymia corresponded with worse QoL.•The number of seizures or the cooccurrence of epilepsy does not influence the initial QoL.•Persons with a history of trauma ...(emotional abuse in childhood, PTSD, and dissociation) had lower QoL.•The number of mental health consultations is linked with an improvement of the QoL over time.•Therapy is one of the keys to improve QoL of patients with PNES.
Previous studies showed that patients with Psychogenic Non-Epileptic Seizures (PNES) have poor quality of life (QoL). This study explored the explicative factors of the QoL at the time of diagnosis and monitored changes over the two years of follow-up.
We evaluated 107 participants with a diagnosis of Psychogenic Non-Epileptic Seizure (PNES), every 6 months for 24 months. Quality of life (QoL) was evaluated using the QOLIE-31 and SF-36 scales (respectively specific and generic scales of QoL). Positive evolution of QoL was defined by the increase in the score of overall QoL using QOLIE-31 sub-scale from baseline to the last interview of the patient. We also collected for each patient data on psychiatric dimensions (childhood abuse, history of traumatic events, post-traumatic stress disorder (PTSD), depression, anxiety, alexithymia, and dissociation), clinical evolution of seizures and the number of mental health consultations.
According to the QOLIE-31 and the SF-36, depression (p ≤ 0.001), anxiety (p < 0.001), alexithymia (p ≤ 0.001), and dissociation (p ≤ 0.004) were related to QoL at the time of the diagnosis. According to SF-36 (mental and physical), PTSD was also significantly associated with QoL (p < 0.05). The number of seizures or the co-occurrence of epilepsy did not influence QoL. Positive evolution of QoL was linked to the number of consultations for mental health issues (p = 0.02).
Post-traumatic dimensions (PTSD, dissociation), alexithymia and psychiatric comorbidities (depression and anxiety disorders) seem to alter QoL in people with PNES. The current study suggests that mental health care improves QoL of patients with PNES.
•Dissociation is related to the worsening of the evolution of the number of seizures.•A diagnostic of PTSD is associated with a decreased number of seizures.•The duration of PNES disorder is not ...implicated in the evolution of the number of seizures.•Comorbid diagnosis of epilepsy is not involved in the evolution of the frequency of seizures.•The number of mental health consultations does not impact the evolution of the number of seizures.
The purpose of this prospective study was to identify predictive factors of the evolution of the number of seizures.
We included 85 individuals with a diagnosis of Psychogenic Nonepileptic Seizure (PNES) who completed at least two clinical interviews spaced by 6 months during a 24-month follow-up. Participants underwent a structured interview with an experimented clinician in PNES to complete standardized evaluation and validated scales. We collected sociodemographic and clinical data on PNES (number of seizures, duration of the disease), anxiety, depression, history of traumas, alexithymia, dissociation, and post-traumatic stress disorder (PTSD). We used a multivariate linear regression analysis to predict the characteristics independently associated with the evolution of the number of seizures in percentage.
Dissociation score was significantly associated with a negative evolution of the number of seizures (p < 0.002). Conversely, the diagnosis of PTSD at inclusion was correlated to a positive evolution of the number of seizures (p < 0.029).
Dissociation was related to a more pejorative evolution of the number of seizures while PTSD diagnosis was associated with a decreased number of seizures. It is therefore essential to improve detection and treatment of post-traumatic dissociation. Further studies are required to understand the impact of PTSD on the evolution of the number of seizures.
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•Adherence to mental health care for patients with PNES is poor, decreases over time.•Reasons for non-adherence include lack of interest and feeling better.•Ongoing follow-up ...decreases sharply between 6 (64.8 %) and 24 months (25.8 %).•Patients who adhere have an overall positive view of their therapy.•Mental health caregivers have an overall more negative view of care than patients.
This study aimed to describe the quality of adherence to mental health care follow-up and the mental health caregiver-patient relationship after diagnosis of psychogenic non-epileptic seizures (PNES).
We conducted an ancillary study of a multicenter prospective study. Patients (n = 108) received a standardized diagnostic explanation of PNES following video-EEG. They were referred to their community mental health centers or to a private psychiatrist/psychologist, who received written information about PNES and the study. Data collected about adherence to care (follow-up started or not, consensual and those who withdrew non-consensually, ongoing follow-up) were cross-tabulated from patients and care structures by telephone at 6, 12, 18 and 24 months after diagnosis. At M24, we collected reasons for stopping follow-up by phone using a predefined 9-item questionnaire. We also assessed the perception of the caregiver-patient relationship among patients who started follow-up and their mental health caregivers with a simple questionnaire based on five dimensions: feeling comfortable, continuity of care, content of therapy sessions, effectiveness of therapy sessions, and the patient's overall assessment of the follow-up.
From M6 to M24, ongoing follow-up decreased from 64.8 to 25.8%, while the “not following initial recommandations” group of patients (those who never started follow-up and those who withdrew non-consensually) increased from 35.2 to 64.9%. We found two main reasons for stopping follow-up: lack of interest and feeling better. Adherent patients had an overall more positive view of their therapy than caregivers.
Only a third of PNES patients adhered to a mental health care program and felt comfortable in the caregiver-patient relationship. Solutions need to be found to help patients understand the interest of follow-up therapy and help mental health caregivers improve their feeling of competence.
To refine the clinical spectrum of a very recently identified phenotype associated with
end-truncating pathogenic variations.
Detailed clinical, neuropsychological, and MRI investigation of 6 ...patients from 2 unrelated families segregating end-truncating
variations.
All patients harbored
end-truncating pathogenic variation. The specific association of a hippocampal type episodic memory dysfunction and a diffuse leukoencephalopathy was observed in all 4 patients aged older than 50 years, slightly worsening over time in 2 patients with several years of follow-up. Additional unspecific neurologic symptoms are reported, such as episodes of numbness, language troubles, or faintness in these 4 patients and the 2 younger ones.
The association of an extensive leukoencephalopathy with an episodic memory dysfunction of the hippocampal type is strongly suggestive of a
end-truncating variation in adults older than 50 years. Early cognitive complaints and imaging abnormalities might exist decades before. Additional transient manifestations can be observed, and this association should lead to
screening to avoid unnecessary invasive investigations.
Through this brief report, we described our clinical considerations about the treatment of motor fluctuations and psychiatric comorbidities in Huntington's disease, for example, aggressiveness and ...obsessive-compulsive disorders. Indeed, as classical treatment, for example, olanzapine and risperidone, were inefficient to improve motor disorders in our patient, we postulated that motor fluctuations could be influenced by the pharmacokinetic profile of oral risperidone. So, in line with recent practice in schizophrenia, we proposed empirically paliperidone 1-month long-acting injections hypothesized to improve motor fluctuations, treatment so far reserved to Huntington's disease patients who are noncompliant to oral risperidone. Improvement was soon observed concerning motor fluctuations, but also aggressiveness, supporting our initial hypothesis.
Parkinson’s disease (PD) is a neurodegenerative disease, that combines motor and non-motor disorders, and alters patients’ autonomy. Even if subthalamic nucleus deep brain stimulation (STN-DBS) ...induces undisputable motor improvement, a post-operative social maladjustment was described by some patients. Our aim was to describe pre-operative illness perceptions in parkinsonian patients, and to determine the possible impact of cognitive restructuration over them. We analyzed 27 parkinsonian patient’s candidates to DBS. The mean age was 59 ± 5.94 years, and mean disease duration was 9.89 ± 4.15 years. The patients had two pre-operative psychological interviews (DBS-45 days, DBS-25 days) and completed the Illness Perception Questionnaire-Revised (IPQ-R) before the first interview and at DBS-1 day. The CRTG group (
n
= 13) had cognitive restructuration during second interview, on dysfunctional cognitions about their perception of post-DBS life which emerged from the first interview. The PIG group (
n
= 14) benefited of two non-structured interviews. No significant differences were found between the visits (DBS–45 days, DBS–1 day) for IPQ-R dimensions, except for the perception of “personal control” over PD which appears significantly higher for CRTG than PIG group (
p
= .039) at DBS-1 day, whereas the scores were quite similar at DBS-45 days. Illness perceptions seem to be stable over time and mostly influenced by disease experience of PD. However, the perception of personal control over PD seemed to be modulated through cognitive restructuration, giving patients’ control back over disease. Before DBS, illness perceptions investigation and restructuration constitute an interesting point to work on, to enhance perceived benefits of neurosurgery.
Trial registration:
Clinical Research Program, N°IDRCB 2008-A00655-50, approved by the local ethics committee (CPP EST III, N° CPP: 08.07.03, first version date: 04/01/2008), registered on the ClinicalTrials.gov website (NCT02893449).
Less is known concerning the evolution of coping strategies before and after deep brain stimulation (DBS) in Parkinson's disease (PD) patients.
In a randomized controlled trial, coping was measured ...with the neurological version of the CHIP (Coping with Health Injuries and Problem) and the BriefCOPE in PD patients before ( T1: DBS - 2 months) and after (T2: + 3 months, T3: + 6 months) DBS. Patients (N = 50, age 59 ± 5.7 years, disease duration 9.54 ± 3.7 years) were randomised in 3 groups: CRTG (preoperative psychological preparation with cognitive restructuring), PIG (preoperative non structured interviews), and CG (no psychological preparation).
Coping strategies are modulated by the time of evaluation. Some strategies are significantly more used preoperatively than postoperatively, as strategies about the research for information (CHIP: F = 16.14;
= .000; η
= .095; BriefCOPE F = 5.71;
= .005; η
= .066), emotional regulation (F = 3.29;
= .042; η
= .029), and well-being searching (F = 4.59;
= .013; η
= .043). Some other strategies appear more used post than preoperatively, as palliative coping (F = 5.57;
= .005; η
= .064), humour (F = 3.35;
= .041; η
= .0.35), and use of substance (F = 4.43;
= .015; η
= .070). No other specific time, group or time per group interaction effect was found.
Coping strategies are crucial for PD patients to adapt to the evolution of their parkinsonian state. Their consideration should be more systematic in the neurosurgical process, particularly when neurological symptoms would remain after DBS. More insights are needed concerning the evolution of coping strategies through DBS and the impact of a preoperative psychotherapy over them in preoperative PD patients.
Studies assessing personality dimensions by the "Temperament and Character Inventory" (TCI) have previously found an association between Parkinson's disease (PD) and lower Novelty Seeking and higher ...Harm Avoidance scores. Here, we aimed to describe personality dimensions of PD patients with motor fluctuations and compare them to a normative population and other PD populations.
All PD patients awaiting Deep Brain Stimulation (DBS) answered the TCI before neurosurgery. Their results were compared to those of historical cohorts (a French normative population, a de novo PD population, and a PD population with motor fluctuations).
Most personality dimensions of our 333 included PD patients with motor fluctuations who are candidates for DBS were different from those of the normative population and some were also different from those of the De Novo PD population, whereas they were similar to those of another population of PD patients with motor fluctuations.
During the course of PD, personality dimensions can change in parallel with the development of motor fluctuations, either due to the evolution of the disease and/or dopaminergic treatments.
Study RTOG 9802 in high-risk diffuse low-grade gliomas (DLGGs) showed the potential synergistic effect on survival of the procarbazine, CCNU, and vincristine (PCV) radiotherapy (RT) combination. ...Limited data on long-term neurocognitive impact and quality of life (QoL) have yet been reported.
We described a monocentric series of patients treated at first line by the combination of PCV immediately followed by RT between January 01, 1982 and January 01, 2017. Radiological data were collected and included volume, velocity of diametric expansion (VDE), and MRI aspects. Long-term neurocognitive and QoL were analyzed.
Twenty patients fulfilled the eligibility criteria. The median response rate was 65.1% (range, 9.6%-99%) at the time of maximal VDE decrease corresponding to a median volume reduction of 79.7 cm
(range, 3.1 to 174.2 cm
), which occurred after a median period of 7.2 years (range, 0.3-21.9) after the end of RT. An ongoing negative VDE was measured in 13/16 patients after the end of RT, with a median duration of 6.7 years (range, 9 months-21.9 years). The median follow-up since radiological diagnosis was 17.5 years (range, 4.8 to 29.5). Estimated median survival was 17.4 years (95% CI: 12; NR). After a long-term follow-up, substantial neurotoxicity was noticed with dementia in six progression-free patients (30%), leading to ventriculo-peritoneal shunt procedures in three, and premature death in five. Thirteen patients (65%) were unable to work with disability status. Successive longitudinal neurocognitive assessments for living patients showed verbal episodic memory deterioration.
PCV-RT combination seems to have not only an oncological synergy but also a long-term neurotoxic synergy to consider before initial therapeutic decision.
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