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1.
IntroductionOur understanding of the determinants of quality of life (QOL) in people living with Parkinson's disease and related disorders (PDRD) has grown remarkably in the past decade. However, several areas remain understudied including determinants of general vs. health-related QOL, determinants in high-need patients, drivers of perceptions of caregivers vs. patients, and exploration of potential determinants outside of the traditional medical model.MethodsThis was a cross-sectional study of 210 PDRD patients and 175 caregivers who completed a battery of measures regarding general QOL (QOL-Alzheimer's disease; QOL-AD), health-related QOL (Parkinson's disease Questionnaire; PDQ-39), cognitive function, mood, grief, spiritual wellbeing, symptom burden, disease severity, disease stage, overall function, socioeconomic status, and healthcare utilization. Elastic net regularization modeling of variables significantly associated with our outcomes of interest were performed to determine predictors of general QOL, compare predictors of general vs. health-related QOL, and compare predictors of patient and caregiver perspectives on patient general QOL.ResultsGeneral QOL was associated with spiritual wellbeing, depression, cognitive function, presence of a caregiver, and recent emergency department visits. In contrast, health-related QOL was associated with grief, symptom burden, income, disease stage, and utilization of counseling services. Caregiver ratings of patient general QOL were associated with patient symptom burden, patient grief, patient global function, caregiver burden, and caregiver spiritual wellbeing.ConclusionsThere are notable differences in the predictors of general QOL, health-related QOL and caregiver perspectives on patient general QOL. These differences have important implications for clinical research and models of clinical care.  相似文献   

2.
Quality of life in psychogenic nonepileptic seizures   总被引:3,自引:1,他引:2  
PURPOSE: Psychogenic nonepileptic seizures (PNESs) are events that alter or seem to alter the neurologic function and, in their appearance, resemble epileptic seizures (ESs). In patients with ESs the psychological and medical aspects of epilepsy greatly influence the health-related quality of life (HRQOL). The relation between these factors and PNESs is not well established. In this study, we compared HRQOL in patients with PNESs with that of patients with ESs. METHODS: We evaluated 105 patients admitted to the Epilepsy Monitoring Unit of University Hospital between January 20, 2001, and January 20, 2002. Only patients with the definite diagnosis of ESs or PNESs were analyzed (n = 85). Patients completed an epilepsy-specific quality-of-life instrument (QOLIE-89), the Profile of Mood States (POMS), and Adverse Events Profile (AEP). We used t tests and regression analyses to contrast HRQOL in PNESs and ESs and to elucidate the main factors associated with HRQOL in patients with PNESs. RESULTS: In our sample, 45 patients had PNESs, and 40 had ESs. The overall HRQOL and scores on 13 of 19 QOLIE-89 subscales were significantly lower (i.e., worse) in PNES than in ES patients. AEP and scores on five of six POMS subscales also were worse in PNES patients than in ES patients. PNES versus ES diagnosis, POMS depression/dejection, and AEP were significant predictors of HRQOL, jointly explaining 65% variation in HRQOL. The lower HRQOL in PNESs versus ESs was in part explained by depression and AEP. CONCLUSIONS: Patients with PNESs have a lower HRQOL and worse mood problems than do patients with ESs. This disadvantage is primarily due to depression and medication side effects, although these factors influence QOL in much the same way in PNES and ES patients. These baseline HRQOL data on patients with PNESs can be used to evaluate the effects of treatment in this patient population.  相似文献   

3.
ObjectiveEarly and accurate diagnosis of patients with psychogenic nonepileptic seizures (PNES) leads to appropriate treatment and improves long-term seizure prognosis. However, this is complicated by the need to record seizures to make a definitive diagnosis. Suspicion for PNES can be raised through knowledge that patients with PNES have increased somatic sensitivity and report more positive complaints on review-of-systems questionnaires (RoSQs) than patients with epileptic seizures. If the responses on the RoSQ can differentiate PNES from other seizure types, then these forms could be an early screening tool.MethodsOur dataset included all patients admitted from January 2006 to June 2016 for video-electroencephalography at UCLA. RoSQs prior to May 2015 were acquired through retrospective chart review (n = 405), whereas RoSQs from subsequent patients were acquired prospectively (n = 190). Controlling for sex and number of comorbidities, we used binomial regression to compare the total number of symptoms and the frequency of specific symptoms between five mutually exclusive groups of patients: epileptic seizures (ES), PNES, physiologic nonepileptic seizure-like events (PSLE), mixed PNES plus ES, and inconclusive monitoring. To determine the diagnostic utility of RoSQs to differentiate PNES only from ES only, we used multivariate logistic regression, controlling for sex and the number of medical comorbidities.ResultsOn average, patients with PNES or mixed PNES and ES reported more than twice as many symptoms than patients with isolated ES or PSLE (p < 0.001). The prospective accuracy to differentiate PNES from ES was not significantly higher than naïve assumption that all patients had ES (76% vs 70%, p > 0.1).DiscussionThis analysis of RoSQs confirms that patients with PNES with and without comorbid ES report more symptoms on a population level than patients with epilepsy or PSLE. While these differences help describe the population of patients with PNES, the consistency of RoSQ responses was neither accurate nor specific enough to be used solely as an early screening tool for PNES. Our results suggest that the RoSQ may help differentiate PNES from ES only when, based on other information, the pre-test probability of PNES is at least 50%.  相似文献   

4.
《Seizure》2014,23(7):537-541
PurposeTo determine whether patients with comorbid epilepsy and psychogenic nonepileptic seizure (PNES) and their caregivers can distinguish between these two events at least one year after initial diagnosis, and to investigate factors associated with correct identification.MethodsAdult patients with at least a one year diagnosis of both epilepsy and PNES, confirmed through video-electroencephalography (VEEG), were selected. Patients and a caregiver of their choice were interviewed and shown videos containing the patients’ epileptic and PNES events. Variables associated with correct identification of events by patients and their caregivers were evaluated.ResultsTwenty-four patients participated in the study. Mean time between VEEG diagnosis and enrollment in the study was 26.8 months (±12.4). Six of patients correctly distinguished between the events shown. Factors associated with correct identification were the absence of intellectual disability, unremitted PNES, and a degree of preserved awareness during the PNES event. Twelve caregivers correctly distinguished between the events shown. Factors associated with correct identification among caregivers were the presentation of only one epileptic seizure type in the patient, and the participation of the caregiver during VEEG monitoring and communication of PNES diagnosis to the patient.ConclusionA significant proportion of patients with epilepsy and PNES and their caregivers seem to be unable to discriminate between these events a year after diagnosis. These findings have implications for both clinical follow-up and research involving this population. Future research should further investigate methods that would allow patients and their caregivers to better distinguish between these two events.  相似文献   

5.
We report two adolescents with refractory seizure disorders in whom both epileptic and psychogenic nonepileptic seizures (PNES) were recorded with intracerebral EEG. The ictal phenomenology of epileptic seizures (ES) and PNES, consisting of hypermotor attacks in the first patient and left-sided painful episodes in the second patient, proved remarkably similar in both cases, highlighting the difficulties which can arise with the distinction of epileptic seizures and PNES based on ictal phenomenology alone.  相似文献   

6.
7.
Identifying psychiatric disorders rather than psychiatric symptoms might help to distinguish patients with psychogenic nonepileptic seizures (PNES) from those with epileptic seizures (ES). Patients with PNES (n=35), patients with ES (n=35), and healthy controls (n=37) were compared with respect to the prevalence of psychiatric disorders in this study. We tested the predictive power of having axis I psychiatric disorders, as well as personality disorders, in distinguishing ES from PNES. There was no significant difference between the patient groups in the prevalence of axis I psychiatric disorders. Personality disorders were more prevalent in the PNES group than in the ES group (P<0.05). Having a personality disorder was the only predictor for the PNES group. Having a personality disorder seems to be a more significant predictor for PNES than having an axis I psychiatric disorder. Greater attention should be paid to personality disorders in the differentiation of PNES and ES and the provision of effective treatment.  相似文献   

8.
Epilepsy has a significant impact on health-related quality of life (HRQOL) of patients and personal coping style is an important determinant. Less is known about home caregivers. This study investigates HRQOL and coping style of both patients and caregivers and their interaction. Epilepsy patients attending the outpatient clinic of the University Medical Centre in Utrecht and their caregivers were sent EQ5D and RAND-36 questionnaires. The Utrecht Coping List was used to chart personal coping styles. HRQOL scores of patients and caregivers were compared to the general Dutch population. The association between patient and caregiver HRQOL scores was calculated. A stepwise backward multivariate linear regression analysis was used to explain variances in caregiver HRQOL. Eighty-six couples (49%) returned all questionnaires. Caregiver HRQOL scores were comparable to the general Dutch population (EQ5D: 0.88-0.88; p?=?0.90, RAND-36 MCS: -2 points; p?=?0.16), while patients HRQOL scores were lower (EQ5D: 0.79; p?相似文献   

9.
10.
The aim of this study was twofold: 1 – to identify a psychological profile of patients with psychogenic nonepileptic seizures (PNESs) that is possibly distinct from that of subjects affected by epileptic seizures (ESs) alone; 2 – to detect the possible differences between the clinical features and psychological profile of patients affected by PNESs alone and those of subjects in whom PNESs are associated with epileptic seizures (ES/PNES patients). We assessed the psychological profiles of 2 different groups of subjects. The first group was of 38 patients who had all developed PNESs after epileptic seizures (ES\PNES, group 1). The second group was of 31 patients with PNESs alone (PNES, group 2). We compared the psychological findings of each of these 2 groups with those of 2 control groups, composed of patients who matched groups 1 and 2 for sex, age, and educational level, but who were affected only by ESs (groups 1C and 2C). Finally, we considered possible differences between the ictal symptoms and signs of PNESs occurring in ES/PNES and in PNES patients. Both the ES/PNES group and the PNES group revealed higher percentages of Somatoform Disorders and Cluster B Personality Disorders (DSM-III-R diagnoses) than the ES patients in the control groups. The scores obtained on the Psychophysiological Distress Scale of the Cognitive Behavioural Assessment Battery (CBA) followed the same pattern. Among PNES ictal phenomena, autonomic symptoms and signs were significantly more frequent in the PNES than in the ES/PNES group. The occurrence of PNESs mimicking generalised tonic-clonic ESs (GTC-PNESs) was significantly associated with a low academic level. The results of this study suggest that the patients with PNESs alone and those affected by PNESs and ESs share the same psychological profile, which is different from that of patients with ESs alone. However, some differences between ES/PNES and PNES patients were found in the clinical semiology of their PNESs. Our findings could have implications for the diagnosis and for the treatment of patients with PNESs. Received: 26 March 2002, Received in revised form: 4 October 2002, Accepted: 21 October 2002 Correspondence to Dr. C. A. Galimberti, M.D.  相似文献   

11.
OBJECTIVES: To survey the burden and psychological problems of family caregivers of demented people. DESIGN: All scores were compared according to gender of the demented patients and which family members were the caregivers. SETTING: Outpatients clinic at the university hospital and the day service system for the elderly. PATIENTS: Sixty-two demented patients living at home and family members acting as caregivers. MEASURES: Cognitive function, activities of daily living (ADL) and behaviour of demented patients were rated using the Hasegawa scale, the ADL scale and the dementia behaviour disturbance (DBD) scale. Caregiver's burden and mental fatigue were rated using a burden scale and a general health questionnaire (GHQ). RESULTS: Caregiver burden correlated negatively with the Hasegawa score and positively with the GHQ and DBD scores. Caregiver burden, GHQ and DBD for male patients were significantly higher than for females. Little difference was evident for caregiver burden scale or patient DBD between spouses and offspring as caregiver, but the GHQ score for spouses was significantly worse than that for offspring. CONCLUSIONS: The difficulty of caregivers in supporting the daily life of demented family members correlated with patients' cognitive impairment, abnormal behaviour and ADL status, and caregivers' difficulty resulted in mental fatigue. Caregivers' relative isolation from friends, attributable to their caregiving responsibility, did not correlate with the demented person's cognitive impairment or ADL status.  相似文献   

12.
IntroductionApproximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population.MethodsSecondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale.ResultsOf 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms.ConclusionFindings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.  相似文献   

13.
Seizure disorders, depression, and health-related quality of life   总被引:13,自引:0,他引:13  
Disease and mood states are important determinants of quality of life (QOL). Low QOL, due to mood states, can be expected especially in psychiatric disorders such as depression. However, patients with seizure disorders may be even more affected because of the combined burden of physical episodes, psychiatric comorbidities, and psychosocial factors (e.g., stigma). In this study, we compare the quality of life in seizure disorders and clinical depression. Based on our earlier findings, we hypothesize that epilepsy patients fare better than patients with psychogenic, nonepileptic seizures (PNES), and we speculate that QOL in PNES is also lower relative to clinical depression. We estimate the relationships between type of seizures (epilepsy vs PNES), depression, and QOL (SF-36) using multiple regression, and we compare the SF-36 scores of patients with epilepsy and PNES (n=194) with the normative data for clinical depression using one-sample t tests. Our findings indicate that depression contributes to the poor QOL in both epilepsy and PNES, but the patients with PNES, even those without depression, have worse QOL compared with both the epilepsy patients and the depression norms. We conclude that evaluating and treating mood states is as important as treating PNES itself when caring for patients with PNES, and it might be the first step toward improving their QOL.  相似文献   

14.
We investigated the possibility of differential diagnosis of patients with epileptic seizures (ES) and patients with psychogenic nonepileptic seizures (PNES) through an advanced analysis of the dynamics of the patients' scalp EEGs. The underlying principle was the presence of resetting of brain's preictal spatiotemporal entrainment following onset of ES and the absence of resetting following PNES. Long-term (days) scalp EEGs recorded from five patients with ES and six patients with PNES were analyzed. It was found that: (1) Preictal entrainment of brain sites was reset at ES (P<0.05) in four of the five patients with ES, and not reset (P=0.28) in the fifth patient. (2) Resetting did not occur (p>0.1) in any of the six patients with PNES. These preliminary results in patients with ES are in agreement with our previous findings from intracranial EEG recordings on resetting of brain dynamics by ES and are expected to constitute the basis for the development of a reliable and supporting tool in the differential diagnosis between ES and PNES. Finally, we believe that these results shed light on the electrophysiology of PNES by showing that occurrence of PNES does not assist patients in overcoming a pathological entrainment of brain dynamics. This article is part of a Supplemental Special Issue entitled The Future of Automated Seizure Detection and Prediction.  相似文献   

15.
PurposePatients with epilepsy (PWE) may suffer from comorbid psychogenic nonepileptic seizures (PNES). The efficacy of vagus nerve stimulation (VNS) in the treatment of epilepsy and depression is established, however the impact on PNES is unknown. Since many patients with PNES have comorbid depression, we explored the impact on quality of life (QOL) that VNS has on PWE and PNES.MethodsThe video electroencephalogram (vEEG) of all patients who underwent VNS at our institution was reviewed. Patients diagnosed with both psychogenic seizures and epileptic seizures on their vEEG were included in this study. These patients were contacted, and given a QOLIE-31 survey to assess their quality of life after VNS. Patients also completed a separate survey created by our group to categorize the quartile of their improvement. Pre-operative psychiatric disease was retrospectively reviewed.ResultsFrom a period of 2001 to 2016, 518 patients underwent placement of VNS for drug resistant epilepsy (DRE) at our institution. In total, 16 patients were diagnosed with both epilepsy and PNES. 11/16 patients responded to our questionnaire and survey. 9 out of 11 patients felt that their epileptic seizures had improved after VNS, while 7 of the 11 patients felt that their psychogenic episodes had improved. 2(28.6%), 1 (14.3%), and 4 (57.1%) of participants said their PNES improved by 25–50%, 50–75%, and 75–100%, respectively. 3(27.3%), 3 (27.3%), 1 (9.1%), and 4 (36.4%) of the participants said their epileptic seizures improved by 0–25%, 25–50%, 50–75%, and 75–100%, respectively. The average overall score for quality of life for the study participants was found to be 51 (± 8) out of 100.ConclusionPatients with epilepsy and comorbid PNES may benefit from VNS. It is unclear whether the benefit is conferred strictly from decreased epileptic seizure burden. The possible effect on PNES may be related to the known effect of VNS on depression. Further studies are necessary to elucidate the role of VNS in the treatment of PNES and possibly other psychiatric disease.  相似文献   

16.
BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.  相似文献   

17.
Depression is a multidimensional condition encompassing affective, physiological, and cognitive symptoms. Although depression's high comorbidity with both epileptic and psychogenic nonepileptic seizures (ES and PNES) has been established, few studies have addressed whether the types of depressive symptoms experienced differ by seizure type (ES and PNES). This study compared the self-reported depressive symptomatology of patients (n = 60 ES and 59 PNES) who underwent video-EEG monitoring and completed self-reported objective measures of psychopathology (PAI and BDI-II). Differences in depressive symptoms were also compared by gender and among several subgroups with ES. Results revealed the PNES group, particularly PNES females, endorsed a significantly higher level of physiological symptoms of depression as measured by the PAI DEP-P subscale than the ES group; the BDI-II did not differ between groups. These findings have potential clinical implications for the identification and management of depressive symptoms among these patient groups.  相似文献   

18.
Purpose: To evaluate different contributions of aspects of family functioning (FF) on health‐related quality of life (HRQOL) in patients with psychogenic nonepileptic seizures (PNES) versus epileptic seizures (ES). Methods: Forty‐five participants with PNES and 32 with ES completed self‐report measures of FF (Family Assessment Device; FAD), HRQOL (Quality of Life in Epilepsy‐31), and depression (Beck Depression Inventory‐II; BDI‐II). The FAD is a self‐report questionnaire that assesses FF along six dimensions and general functioning. Regression analyses were used to evaluate the contribution of FF to HRQOL above and beyond the effects of disease severity and depression. Key Findings: Mean Family General Functioning fell in the unhealthy range in participants with ES or PNES. On further analysis, male participants in each group endorsed unhealthy levels of FF compared to female participants. Patients with PNES reported poorer HRQOL and greater depressive symptoms compared to ES participants; there were no gender differences in HRQOL. Regression analyses indicated that the FAD Roles subscale predicted reduced HRQOL in patients with PNES after controlling for illness duration, seizure frequency, and depression. After controlling for the same factors, Communication and Affective Involvement subscales scores predicted HRQOL in ES participants. Significance: Family dysfunction was reported in both ES and PNES participants, but greater family dysfunction was experienced by male participants in both groups. Aspects of FF predicted HRQOL in patients with PNES and ES differentially. FF may be an important treatment target to enhance coping in these groups, although the treatments may need to target different aspects of FF in PNES versus ES.  相似文献   

19.
ObjectiveWe 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.MethodsData from 138 patients (105 women [77%]), including 46 with PNES/ES (39 ± 12 years), 46 with PNES-only (39 ± 11 years), and 46 with ES-only (39 ± 11 years), were compared using logistic regression analysis after adjusting for clustering effect.ResultsIn 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).ConclusionsRight-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.  相似文献   

20.
PURPOSE: Patients with psychogenic nonepileptic seizures (PNES) and those with epileptic seizures (ES) purportedly have roughly equal neurocognitive deficits. However, recent findings suggest that patients with somatoform disorders exhibit more variable effort on neurocognitive testing than do controls. We reexamined neurocognitive function in patients with ESs and PNES by using symptom validity testing to control for variability in effort. METHODS: Patients referred for video-EEG monitoring were administered the Word Memory Test (WMT), a measure of symptom validity, as part of neuropsychological evaluation. Patients classified with ictal video-EEG recordings as having ES (n = 41) or PNES (n = 43) were compared on neurocognitive and WMT performance and demographic, psychiatric, and medical variables. RESULTS: Striking rates of WMT failure were observed in the PNES (51.2%) group, but not in the ES (8.1%) group (p = <0.001) after controlling for false-positive errors. Although the PNES and ES groups reported equivalent neurologic histories, the PNES group exhibited less objective evidence of impairment as measured by valid neuropsychological testing, MRI of the brain, and video-EEG monitoring. CONCLUSIONS: Many patients with PNES do not put forth maximal effort during neuropsychological assessment. When patients with PNES put forth valid effort, they demonstrate less objective evidence of neuropathologic injury or disease than do patients with ES. The cognitive impairment reported by this group appears to be more a function of motivational (although not necessarily intentional) factors than of verifiable neuropathology.  相似文献   

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