Epilepsy in the end of life phase of brain tumor patients: a systematic review.
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ABSTRACT:
SUBMITTER: Koekkoek JAF
PROVIDER: S-EPMC6657388 | biostudies-literature | 2014 Sep
REPOSITORIES: biostudies-literature
Publications
Epilepsy in the end of life phase of brain tumor patients: a systematic review.
Koekkoek Johan A F JAF Dirven Linda L Reijneveld Jaap C JC Postma Tjeerd J TJ Grant Robin R Pace Andrea A Oberndorfer Stefan S Heimans Jan J JJ Taphoorn Martin J B MJB
Neuro-oncology practice 20140901 3
Epileptic seizures are common in patients with primary or secondary malignant brain tumor. However, current knowledge on the occurrence of seizures during the end of life (EOL) phase of brain tumor patients is limited. Because symptom management with preservation of quality of life is of major importance for patients with a malignant brain tumor, particularly in the EOL, it is necessary to gain a deeper understanding of seizures and their management during this phase. We performed a systematic r ...[more]
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Project description:(1) Background: Epilepsy is a frequent comorbidity in patients with brain tumors, in whom seizures are often drug-resistant. Current evidence suggests that excess of glutamatergic activity in the tumor microenvironment may favor epileptogenesis, but also tumor growth and invasiveness. The selective non-competitive α-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid (AMPA) receptor antagonist perampanel (PER) was demonstrated to be efficacious and well-tolerated in patients with focal seizures. Moreover, preclinical in vitro studies suggested a potential anti-tumor activity of this drug. In this systematic review, the clinical evidence on the efficacy and tolerability of PER in brain tumor-related epilepsy (BTRE) is summarized. (2) Methods: Five databases and two clinical trial registries were searched from inception to December 2022. (3) Results: Seven studies and six clinical trials were included. Sample size ranged from 8 to 36 patients, who received add-on PER (mean dosage from 4 to 7 mg/day) for BTRE. After a 6-12 month follow-up, the responder rate (% of patients achieving seizure freedom or reduction ≥ 50% of seizure frequency) ranged from 75% to 95%, with a seizure freedom rate of up to 94%. Regarding tolerability, 11-52% of patients experienced non-severe adverse effects (most frequent: dizziness, vertigo, anxiety, irritability). The retention rate ranged from 56% to 83%. However, only up to 12.5% of patients discontinued the drug because of the adverse events. (4) Conclusions: PER seems to be efficacious, safe, and well-tolerated in patients with BTRE. Further randomized studies should be conducted in more homogeneous and larger populations, also evaluating the effect of PER on tumor progression, overall survival, and progression-free survival.
| S-EPMC10045654 | biostudies-literature
Project description:BackgroundDementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia.AimTo identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia.DesignSystematic review and narrative synthesis.Data sourcesElectronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia.ResultsThirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life.ConclusionEnd-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.
| S-EPMC8637358 | biostudies-literature
Project description:Unpredictable disease trajectories make early clarification of end-of-life (EoL) care preferences in older patients with multimorbidity advisable. This mixed methods systematic review synthesizes studies and assesses such preferences. Two independent reviewers screened title/abstracts/full texts in seven databases, extracted data and used the Mixed Methods Appraisal Tool to assess risk of bias (RoB). We synthesized findings from 22 studies (3243 patients) narratively and, where possible, quantitatively. Nineteen studies assessed willingness to receive life-sustaining treatments (LSTs), six, the preferred place of care, and eight, preferences regarding shared decision-making processes. When unspecified, 21% of patients in four studies preferred any LST option. In three studies, fewer patients chose LST when faced with death and deteriorating health, and more when treatment promised life extension. In 13 studies, 67% and 48% of patients respectively were willing to receive cardiopulmonary resuscitation and mechanical ventilation, but willingness decreased with deteriorating health. Further, 52% of patients from three studies wished to die at home. Seven studies showed that unless incapacitated, most patients prefer to decide on their EoL care themselves. High non-response rates meant RoB was high in most studies. Knowledge of EoL care preferences of older patients with multimorbidity increases the chance such care will be provided.
| S-EPMC7795676 | biostudies-literature
Project description:BackgroundMany studies have measured the intensity of end of life care. However, no summary of the measures used in the field is currently available.ObjectivesTo summarise features, characteristics of use and reported validity of measures used for evaluating intensity of end of life care.MethodsThis was a systematic review according to PRISMA guidelines. We performed a comprehensive literature search in Ovid Medline, Embase, The Cochrane Library of Systematic Reviews and reference lists published between 1990-2014. Two reviewers independently screened titles, abstracts, full texts and extracted data. Studies were eligible if they used a measure of end of life care intensity, defined as all quantifiable measures describing the type and intensity of medical care administered during the last year of life.ResultsA total of 58 of 1590 potentially eligible studies met our inclusion criteria and were included. The most commonly reported measures were hospitalizations (n = 44), intensive care unit admissions (n = 39) and chemotherapy use (n = 27). Studies measured intensity of care in different timeframes ranging from 48 hours to 12 months. The majority of studies were conducted in cancer patients (n = 31). Only 4 studies included information on validation of the measures used. None evaluated construct validity, while 3 studies considered criterion and 1 study reported both content and criterion validity.ConclusionsThis review provides a synthesis to aid in choosing intensity of end of life care measures based on their previous use but simultaneously highlights the crucial need for more validation studies and consensus in the field.
| S-EPMC4396980 | biostudies-literature
Project description:BackgroundDue to advances in the treatment of pediatric brain tumors (PBT), an increasing number of patients are experiencing the transition from the pediatric to the adult health care system. This requires efficient transitional models.MethodsWe systematically reviewed the literature regarding PBT concerning different transitional models and aspects of the transitional period. For this purpose, PubMed, Medline, and Embase databases were searched systematically through January 2022.ResultsWe reviewed a total of 304 studies, of which 15 were ultimately included. We identified five transition models described within the literature, while the most frequently mentioned ones were the "adult caregiver model" (45.5%), "joint caregiver model" (45.5%), "continued caregiver model" (27.3%), and the "specialized clinic model" (27.3%). During the transition, the most frequent challenges mentioned by the patients were the lack of knowledge about the disease by the adult health care professionals (62.5%) and the difficulty of establishing a new relationship with the new physician, environment, or hospital (37.5%).ConclusionsAn efficient transitional model is mandatory for patients with PBT. Continuity in the treatment and care of the patient and their family is essential. For this purpose, in patients with PBT, the "continued caregiver model", and for NF1 and TSC patients, the "specialized clinic model" seems optimal to offer continuity of care. If such models are unavailable, efficient communication with patients, families, and specialists in a multidisciplinary network is even more critical.
| S-EPMC9026288 | biostudies-literature
Project description:BackgroundConversation and discourse analytic research has yielded important evidence about skills needed for effective, sensitive communication with patients about illness progression and end of life.ObjectivesTo: ▸ Locate and synthesise observational evidence about how people communicate about sensitive future matters; ▸ Inform practice and policy on how to provide opportunities for talk about these matters; ▸ Identify evidence gaps.DesignSystematic review of conversation/discourse analytic studies of recorded interactions in English, using a bespoke appraisal approach and aggregative synthesis.Results19 publications met the inclusion criteria. We summarised findings in terms of eight practices: 'fishing questions'-open questions seeking patients' perspectives (5/19); indirect references to difficult topics (6/19); linking to what a patient has already said-or noticeably not said (7/19); hypothetical questions (12/19); framing difficult matters as universal or general (4/19); conveying sensitivity via means other than words, for example, hesitancy, touch (4/19); encouraging further talk using means other than words, for example, long silences (2/19); and steering talk from difficult/negative to more optimistic aspects (3/19).ConclusionsPractices vary in how strongly they encourage patients to engage in talk about matters such as illness progression and dying. Fishing questions and indirect talk make it particularly easy to avoid engaging-this may be appropriate in some circumstances. Hypothetical questions are more effective in encouraging on-topic talk, as is linking questions to patients' cues. Shifting towards more 'optimistic' aspects helps maintain hope but closes off further talk about difficulties: practitioners may want to delay doing so. There are substantial gaps in evidence.
| S-EPMC4251180 | biostudies-literature
Project description:BACKGROUND::End-stage liver disease is a common cause of morbidity and mortality worldwide, yet little is known about its symptomatology and impact on health-related quality of life. AIM::To describe symptom prevalence and health-related quality of life of patients with end-stage liver disease to improve care. DESIGN::Systematic review. DATA SOURCES::We searched eight electronic databases from January 1980 to June 2018 for studies investigating symptom prevalence or health-related quality of life of adult patients with end-stage liver disease. No language restrictions were applied. Meta-analyses were performed where appropriate. RESULTS::We included 80 studies: 35 assessing symptom prevalence, 41 assessing health-related quality of life, and 4 both. The instruments assessing symptoms varied across studies. The most frequently reported symptoms were as follows: pain (prevalence range 30%-79%), breathlessness (20%-88%), muscle cramps (56%-68%), sleep disturbance (insomnia 26%-77%, daytime sleepiness 29.5%-71%), and psychological symptoms (depression 4.5%-64%, anxiety 14%-45%). Erectile dysfunction was prevalent (53%-93%) in men. The health-related quality of life of patients with end-stage liver disease was significantly impaired when compared to healthy controls or patients with chronic liver disease. Compared with compensated cirrhosis, decompensation led to significant worsening of both components of the 36-Item Short Form Survey although to a larger degree for the Physical Component Summary score (decrease from average 6.4 (95% confidence interval: 4.0-8.8); p?<?0.001) than for the Mental Component Summary score (4.5 (95% confidence interval: 2.4-6.6); p?<?0.001). CONCLUSION::The symptom prevalence of patients with end-stage liver disease resembled that of patients with other advanced conditions. Given the diversity of symptoms and significantly impaired health-related quality of life, multidisciplinary approach and timely intervention are crucial.
| S-EPMC6291907 | biostudies-other
Project description:BackgroundPeople with frailty may have specific needs for end-of-life care, but there is no consensus on how to identify these people in a timely way, or whether they will benefit from intervention.AimTo synthesise evidence on identification of older people with frailty approaching end-of-life, and whether associated intervention improves outcomes.DesignSystematic review (PROSPERO: CRD42020462624).Data sourcesSix databases were searched, with no date restrictions, for articles reporting prognostic or intervention studies. Key inclusion criteria were adults aged 65 and over, identified as frail via an established measure. End-of-life was defined as the final 12 months. Key exclusion criteria were proxy definitions of frailty, or studies involving people with cancer, even if also frail.ResultsThree articles met the inclusion criteria. Strongest evidence came from one study in English primary care, which showed distinct trajectories in electronic Frailty Index scores in the last 12 months of life, associated with increased risk of death. We found no studies evaluating established clinical tools (e.g. Gold Standards Framework) with existing frail populations. We found no intervention studies; the literature on advance care planning with people with frailty has relied on proxy definitions of frailty.ConclusionClear implications for policy and practice are hindered by the lack of studies using an established approach to assessing frailty. Future end-of-life research needs to use explicit approaches to the measurement and reporting of frailty, and address the evidence gap on interventions. A focus on models of care that incorporate a palliative approach is essential.
| S-EPMC8637378 | biostudies-literature
Project description:ObjectiveTo systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success.MethodsWe conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449).ResultsA total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards.ConclusionResearch examining end of life care decision aid use consistently reports positive outcomes.InnovationThis review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.
| S-EPMC10957449 | biostudies-literature
Project description:ImportancePolicies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status.ObjectiveTo systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status.Evidence reviewWe searched for longitudinal studies of patients' preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded.FindingsA total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 70% of patients' preferences for EOL care were stable over time. Preference stability was generally greater among inpatients and seriously ill outpatients than among older adults without serious illnesses (P < .002). Patients with higher education and who had engaged in advance care planning had greater preference stability, and preferences to forgo therapies were generally more stable than preferences to receive therapies. Among 9 of the 24 studies (38%) assessing changes in health status, no consistent relationship with preference changes was identified.Conclusions and relevanceConsiderable variability among studies in the methods of preference assessment, the time between assessments, and the definitions of stability preclude meta-analytic estimates of the stability of patients' preferences and the factors influencing these preferences. Although more seriously ill patients and those who engage in advance care planning most commonly have stable preferences for future treatments, further research in real-world settings is needed to confirm the utility of advance care plans for future decision making.
| S-EPMC8243894 | biostudies-literature