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Demência , Assistência de Longa Duração , Caminhada , Humanos , Masculino , Feminino , Idoso , Idoso de 80 Anos ou mais , Casas de SaúdeRESUMO
OBJECTIVES: Vascular cognitive impairment is the second most common type of cognitive impairment. Care needs of community-dwelling people with vascular cognitive impairment and their caregivers have not been thoroughly studied. Therefore, we aimed to explore care needs of people with vascular cognitive impairment and their family caregivers. DESIGN: A qualitative interview study. SETTING AND PARTICIPANTS: Participants were purposefully sampled community-dwelling people with vascular cognitive impairment and their family caregivers. METHODS: Interviews were audiotaped and transcribed verbatim. Analysis and data collection followed an iterative process, until data saturation was achieved. We conducted 18 interviews (nine people with vascular cognitive impairment and nine caregivers), concerning 13 unique people with vascular cognitive impairment. We analyzed the data using inductive thematic analysis following the Braun & Clark method. The study was reported in accordance with the COREQ criteria. FINDINGS: Five themes were identified in the care needs reported by people with vascular cognitive impairment and family caregivers: (1) Specific information need with subtheme (1A) No memory problem, no dementia? (2) Being respected as a person, (3) Differing concerns about the future, (4) The roles of the caregiver and (5) Decisiveness from professional healthcare. CONCLUSIONS AND IMPLICATIONS: The care needs of people with vascular cognitive impairment and their caregivers were affected by (a lack of knowledge about) the characteristic symptoms of this condition. Participants equated cognitive impairment or dementia to memory loss ("Alzheimerization"), although memory loss was not their biggest challenge. People with vascular cognitive impairment and caregivers preferred resolute and decisive healthcare professionals. These professionals activate the person with vascular cognitive impairment who lacks initiative and diminishe role conflict of the caregiver. Care for people with vascular cognitive impairment and their caregivers could be improved by providing tailored information, promoting awareness of neuropsychiatric symptoms, particularly apathy, and by healthcare professionals providing more guidance in decision-making.
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Disfunção Cognitiva , Demência , Humanos , Demência/psicologia , Disfunção Cognitiva/psicologia , Cuidadores/psicologia , Transtornos da Memória , Coleta de Dados , Pesquisa QualitativaRESUMO
A booklet was developed in Canada in 2005 to inform family caregivers of people with dementia about end-of-life care. A Dutch version was published in 2011 after evaluation and revision. Developments in research and society call for a second revision. The aim of this study was to map out users' (family caregivers and healthcare professionals) preferences regarding the look and feel, and content of the booklet. To this end, in addition to the current paper booklet, we created a prototype website and app, along with three illustration options. Twenty-one family caregivers and nineteen healthcare professionals completed a questionnaire about their preferences. Open ended questions were analyzed using content analysis, multiple-choice questions using descriptive analysis. The participants valued the question-answer format. They perceived the text as too medically oriented and they expressed a need for more inclusive language and broader information. The participants found images of people suitable for the booklet and they preferred the illustrations to be less focused on the medical context. The participants preferred the paper booklet and a website. By understanding family caregivers' and healthcare professionals' preferences, in the second revision, the booklet can be tailored to the user. It is expected that this tailoring will support informing family caregivers about end-of-life care.
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Demência , Assistência Terminal , Humanos , Cuidadores , Folhetos , Atenção à Saúde , Demência/terapiaRESUMO
OBJECTIVES: In the Netherlands, a case of euthanasia of an incompetent patient with dementia and an advance euthanasia directive (AED) caused great societal unrest and led to a petition signed by more than 450 physicians. In this paper, we investigate these physicians' reasons and underlying motives for supporting the 'no sneaky euthanasia' petition, with the aim of gaining insight into the dilemmas experienced and to map out topics in need of further guidance. METHODS: Twelve in-depth interviews were conducted with physicians recruited via the webpage 'no sneaky euthanasia'. General topics discussed were: reasons for signing the petition, the possibilities of euthanasia in incompetent patients and views on good end-of-life care. Data were interpreted using thematic content analysis and the framework method. RESULTS: Reasons for supporting the petition are dilemmas concerning 'sneaky euthanasia', the over-simplified societal debate, physicians' personal moral boundaries and the growing pressure on physicians. Analysis revealed three underlying motives: aspects of handling a euthanasia request based on an AED, good end-of-life care and the doctor as a human being. CONCLUSIONS: Although one of the main reasons for participants to support the petition was the opposition to 'sneaky euthanasia', our results show a broader scope of reasons. This includes their experience of growing pressure to comply with AEDs, forcing them to cross personal boundaries. The underlying motives are related to moral dilemmas around patient autonomy emerging in cases of decision-making disabilities in advanced dementia. To avoid uncertainty regarding patients' wishes, physicians express their need for reciprocal communication.
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Demência , Eutanásia , Médicos , Humanos , Diretivas Antecipadas , Pesquisa Qualitativa , Países Baixos , Demência/diagnósticoRESUMO
BACKGROUND: Agitation is a common challenging behaviour in dementia with a negative influence on patient's quality of life and a high caregiver burden. Treatment is often difficult. Current guidelines recommend restrictive use of psychotropic drug treatment, but guideline recommendations do not always suffice. OBJECTIVE: To explore how physicians decide on psychotropic drug treatment for agitated behaviour in dementia when the guideline prescribing recommendations are not sufficient. METHODS: We conducted five online focus groups with a total of 22 elderly care physicians, five geriatricians and four old-age psychiatrists, in The Netherlands. The focus groups were thematically analysed. RESULTS: We identified five main themes. Transcending these themes, in each of the focus groups physicians stated that there is 'not one size that fits all'. The five themes reflect physicians' considerations when deciding on psychotropic drug treatment outside the guideline prescribing recommendations for agitated behaviour in dementia: (1) 'reanalysis of problem and cause', (2) 'hypothesis of underlying cause and treatment goal', (3) 'considerations regarding drug choice', (4) 'trial and error' and (5) 'last resort: sedation'. CONCLUSION: When guideline prescribing recommendations do not suffice, physicians start with reanalysing potential underlying causes. They try to substantiate and justify medication choices as best as they can with a hypothesis of underlying causes or treatment goal, using other guidelines, and applying personalised psychotropic drug treatment.
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Demência , Médicos , Idoso , Demência/diagnóstico , Demência/tratamento farmacológico , Humanos , Padrões de Prática Médica , Psicotrópicos/efeitos adversos , Qualidade de VidaRESUMO
Introduction: Many nursing homes (NHs) are affected by COVID-19 and 30-day mortality is high. Knowledge on recovery of NH residents after COVID-19 is limited. Therefore, we investigated the trajectory in the first three months after a COVID-19 infection in NH residents. Methods: Retrospective observational cohort study of Dutch NH residents with COVID-19 between 1 September 2020 and 1 March 2021. Prevalence of COVID-19 symptoms and functioning was determined using interRAI (ADL-Hierarchy Scale (ADL-HS), Cognitive Performance Scale (CPS) and Revised Index of Social Engagement (RISE)) at four time points. Descriptive and pattern analyses were performed. Results: Eighty-six residents were included. Symptom prevalences after three months were higher than at baseline. At group level, functioning on all domains deteriorated and was followed by recovery towards baseline, except for ADL functioning. There were four trajectories; 9.3% had no deterioration. Total and partial recovery occurred in respectively 30.2% and 55.8% of the residents. In 4.7% there was no recovery. Conclusion: In 86% of NH residents surviving three months after COVID-19, occurrence of COVID-19 symptoms and deterioration in functioning was followed by recovery. COVID-19 symptoms fatigue and sleeping behaviour were significantly more prevalent, and ADL functioning was significantly lower, at three months compared to baseline.
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OBJECTIVE: To describe the course of neuropsychiatric symptoms in nursing home residents with dementia during the step-by-step lifting of restrictions after the first wave of the COVID-19 pandemic in the Netherlands, and to describe psychotropic drug use (PDU) throughout the whole first wave. METHODS: Longitudinal cohort study of nursing home residents with dementia. We measured neuropsychiatric symptoms using the Neuropsychiatric Inventory-Questionnaire (NPI-Q). From May to August 2020, the NPI-Q was filled in monthly. Psychotropic drug use was retrieved from the electronic prescription system, retrospectively for the months February to April and prospectively for the months May to August. RESULTS: We followed 252 residents with dementia in 19 Dutch nursing homes. Agitation was the most prevalent type of neuropsychiatric symptom at each assessment. Overall, the prevalence and severity of agitation and depression significantly decreased over time. When considering more in detail, we observed that in some residents specific neuropsychiatric symptoms resolved (resolution) while in others specific neuropsychiatric symptoms developed (incidence) during the study period. For the majority of the residents, neuropsychiatric symptoms persisted over time. Psychotropic drug use remained stable over time throughout the whole first wave of the pandemic. CONCLUSIONS: At group level, lifting the measures appeared to have beneficial effects on the prevalence and severity of agitation and depression in residents with dementia. Nevertheless, on an individual level we observed high heterogeneity in the course of neuropsychiatric symptoms over time. Despite the pressure of the pandemic and the restrictions in social contact imposed, PDU remained stable.
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COVID-19 , Demência , Estudos de Coortes , Demência/diagnóstico , Demência/tratamento farmacológico , Demência/epidemiologia , Humanos , Estudos Longitudinais , Casas de Saúde , Pandemias , Agitação Psicomotora/diagnóstico , Agitação Psicomotora/tratamento farmacológico , Agitação Psicomotora/epidemiologia , Psicotrópicos/uso terapêutico , Estudos Retrospectivos , SARS-CoV-2RESUMO
OBJECTIVES: To explore how physicians in Dutch nursing homes practiced advance care planning (ACP) during the first wave of the COVID-19 pandemic, and to explore whether and how ACP changed during the first wave of the pandemic. DESIGN: Qualitative analysis of an online, mainly open-ended questionnaire on ACP among physicians working in nursing homes in the Netherlands during the first wave of the COVID-19 pandemic. SETTING AND PARTICIPANTS: Physicians in Dutch nursing homes. METHODS: Respondents were asked to describe a recent case in which they had a discussion on anticipatory medical care decisions and to indicate whether ACP was influenced by the COVID-19 pandemic in that specific case and in general. Answers were independently coded and a codebook was compiled in which the codes were ordered by themes that emerged from the data. RESULTS: A total of 129 questionnaires were filled out. Saturation was reached after analyzing 60 questionnaires. Four main themes evolved after coding the questionnaires: reasons for ACP discussion, discussing ACP, topics discussed in ACP, and decision making in ACP. COVID-19-specific changes in ACP indicated by respondents included (1) COVID-19 infection as a reason for initiating ACP, (2) a higher frequency of ACP discussions, (3) less face-to-face contact with surrogate decision makers, and (4) intensive care unit admission as an additional topic in anticipatory medical decision making. CONCLUSIONS AND IMPLICATIONS: ACP in Dutch nursing homes has changed because of the COVID-19 pandemic. Maintaining frequent and informal contact with surrogate decision makers fosters mutual understanding and aids the decision-making process in ACP.
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Planejamento Antecipado de Cuidados , COVID-19 , Humanos , Casas de Saúde , Pandemias/prevenção & controle , SARS-CoV-2RESUMO
OBJECTIVES: On May 11, the Dutch Government allowed 26 nursing homes to welcome 1 visitor per resident, after 2 months of lockdown. The study aimed to monitor in-depth the feasibility of the regulations and their impact on the well-being of residents, their visitors, and healthcare staff. DESIGN: Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes. PARTICIPANTS: Visitors and healthcare professionals. INTERVENTION: Allowing visitors using local regulations based on national guidelines. MEASUREMENTS: Digital questionnaire, analyzing documentation such as infection prevention control protocols, attending meetings of COVID-19 crisis teams, in-depth telephone or in-person interviews with visitors and healthcare professionals, and on-site observations. RESULTS: National guidelines were translated with great variety into local care practice. Healthcare professionals agreed that reopening would increase the well-being of the residents and their loved ones. However, there were also great worries for increasing workload, increasing the risk of emotional exhaustion, and the risk of COVID-19 infections. Compliance with local regulations was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects. CONCLUSION: The complete lockdown of Dutch nursing homes had a substantial impact on the well-being of the residents. The reopening was welcomed by all stakeholders, but provided a high organizational workload as well as feelings of ambivalence among care staff. In the second wave, a more tailored approach is being implemented. However, facilities are sometimes still struggling to find the right balance between infection control and well-being.
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COVID-19 , COVID-19/prevenção & controle , Controle de Doenças Transmissíveis , Atenção à Saúde/métodos , Humanos , Casas de Saúde , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: This study aimed to investigate the interrelation between slowing in walking, thinking and mood, and their relationship with cerebral small vessel disease (CSVD) in a geriatric population. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: 566 geriatric outpatients from the Amsterdam Aging Cohort (49% female; age 79 ±6 years), who visited the Amsterdam UMC geriatric outpatient memory clinic. METHODS: Patients underwent a comprehensive geriatric assessment, brain imaging, and a neuropsychological assessment as part of medical care. Three slowing aspects were investigated: gait speed, processing speed, and apathy symptoms (higher scores indicating more advanced slowing). We visually rated CSVD [white matter hyperintensities (WMHs), strategic lacunes, and microbleeds] on brain imaging. RESULTS: Regression analyses showed that slowing in walking (gait speed) was associated with slowing in thinking [processing speed; ß = 0.35, 95% confidence interval (CI) 0.22, 0.48] and slowing in mood (apathy symptoms; ß = 0.21, 95% CI 0.13, 0.30), independent of important confounders. Large confluent areas of WMH (Fazekas 3) were associated with all slowing aspects: gait speed (ß = 0.49, 95% CI 0.28, 0.71), processing speed (ß = 0.36, 95% CI 0.19, 0.52) and apathy symptoms (ß = 0.30, 95% CI 0.09, 0.51). In addition, in patients with more slowing aspects below predefined cutoffs, severe WMH was more common. Presence of ≥3 microbleeds was associated with apathy symptoms (ß = 0.39, 95% CI 0.12, 0.66), whereas lacunes were not associated with slowing. CONCLUSIONS AND IMPLICATIONS: This study provides evidence that slowing in walking, thinking, and mood are closely related and associated with CSVD. This phenotype or geriatric syndrome could be helpful to identify and characterize patients with CSVD.
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Doenças de Pequenos Vasos Cerebrais , Imageamento por Ressonância Magnética , Idoso , Idoso de 80 Anos ou mais , Encéfalo , Estudos Transversais , Feminino , Humanos , Masculino , Velocidade de CaminhadaRESUMO
OBJECTIVES: To mitigate the spread of COVID-19, a nationwide restriction for all visitors of residents of long-term care facilities including nursing homes (NHs) was established in the Netherlands. The aim of this study was an exploration of dilemmas experienced by elderly care physicians (ECPs) as a result of the COVID-19 driven restrictive visiting policy. SETTING AND PARTICIPANTS: ECPs working in Dutch NHs. METHODS: A qualitative exploratory study was performed using an open-ended questionnaire. A thematic analysis was applied. Data were collected between April 17 and May 10, 2020. RESULTS: Seventy-six ECPs answered the questionnaire describing a total of 114 cases in which they experienced a dilemma. Thematic analysis revealed 4 major themes: (1) The need for balancing safety for all through infection prevention measures versus quality of life of the individual residents and their loved ones; (2) The challenge of assessing the dying phase and how the allowed exception to the strict visitor restriction in the dying phase could be implemented; (3) The profound emotional impact on ECPs; (4) Many alternatives for visits highlight the wish to compensate for the absence of face-to-face contact opportunities. Many alternatives for visits highlight the wish to compensate for the absence of face-to-face opportunities but given the diversity of NH residents, alternatives were often only suitable for some of them. CONCLUSIONS AND IMPLICATIONS: ECPs reported that the restrictive visitor policy deeply impacts NHs residents, their loved ones, and care professionals. The dilemmas encountered as a result of the policy highlight the wish by ECPs to offer solutions tailored to the individual residents. We identified an overview of aspects to consider when drafting future visiting policies for NHs during the COVID-19 pandemic.
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COVID-19 , Casas de Saúde , Política Organizacional , Visitas a Pacientes , Humanos , Países Baixos , Pandemias , Pesquisa Qualitativa , SARS-CoV-2 , Inquéritos e QuestionáriosRESUMO
Despite multimodal antitumor treatment, all patients with an anaplastic glioma will be confronted with incurability in due course and enter the end-of-life (EOL) phase; the period when the patients' condition declines and tumor-directed treatment is no longer effective. Although palliative care is important in all stages of the disease, it is of utmost importance in the EOL phase. The main goal of palliative care is to improve or maintain the quality of life of the patients and their relatives through the prevention and relief of suffering. This review focuses on different aspects of the EOL phase (symptoms and signs, EOL decision-making, advance care planning, organization of care and caregiver burden) and will provide recommendations to optimize palliative care.
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Neoplasias Encefálicas/terapia , Glioma/terapia , Cuidados Paliativos , Assistência Terminal , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/psicologia , Tomada de Decisões , Glioma/complicações , Glioma/psicologia , Humanos , Qualidade de Vida , Assistência Terminal/normasRESUMO
BACKGROUND: To analyse the prevalence of seizures and use of antiepileptic drugs (AEDs) in the end-of-life (EOL) phase of patients with high-grade glioma (HGG) and to identify patient characteristics associated with the occurrence of seizures in the last week of life. METHODS: Patients were recruited from a cohort of adults with HGG diagnosed in 2005 and 2006 in three tertiary referral centres for patients with brain tumour. Physicians involved in the EOL care of patients who had HGG and had died were asked to fill in a questionnaire regarding seizures and antiepileptic treatment in the last 3 months and in the last week of life. Data on seizures and use of AEDs before the EOL phase were obtained from medical correspondence and hospital medical charts. RESULTS: Out of 155 patients who had died, data for 92 patients were eligible for analysis. Twenty-nine percent of these 92 patients had seizures during the last week of life; 33% of patients had a history of seizures and 22% did not. Besides a history of status epilepticus (p=0.047), we identified no other significant risk factors for developing seizures in the last week of life. Seventy percent of all patients used AEDs before the last week of life. In 35% of patients in whom AEDs were tapered, seizures occurred in the last week of life. CONCLUSIONS: Our results demonstrate that seizures are a common symptom in patients with HGG during the last week of life and emphasise the importance of adequate AED treatment throughout the EOL phase.
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Anticonvulsivantes/uso terapêutico , Neoplasias Encefálicas/epidemiologia , Glioma/epidemiologia , Convulsões/tratamento farmacológico , Convulsões/epidemiologia , Assistência Terminal/métodos , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Cuidados Paliativos/métodos , Prevalência , Inquéritos e QuestionáriosRESUMO
BACKGROUND: High-grade gliomas (HGG) are rare and incurable; yet, these neoplasms result in a disproportionate share of cancer morbidity and mortality. Treatment of HGG patients is directed not merely towards prolonging life but also towards quality of life, which becomes the major goal in the end of life (EOL). The latter has received increasing attention over the last decade. METHODS: We reviewed the literature related to the EOL phase of HGG patients from 1966 up to April 2012. Articles were retrieved from PubMed, Embase, Cinahl, PsycINFO and Cochrane database. We then selected papers for analysis using pre-determined inclusion criteria and subtracted information on the topics of interest. RESULTS: The search yielded 695 articles, of which 17 were classified eligible for analysis according to pre-defined inclusion criteria. Reviewed topics were symptoms and signs, quality of life and quality of dying, caregiver burden, organization and location of palliative care, supportive treatment, and EOL decision making. Nearly all identified studies were observational, with only two non-randomized intervention studies. Symptom burden is high in the EOL phase and affects the quality of life of both patient and carer. Palliative care services are more intensively used compared to other cancer patients. Cognitive deficits increase as the disease progresses, hampering communication and decision making. CONCLUSION: The EOL phase of HGG is substantially different from other patient groups, and more clinical studies in HGG on supportive medication, advance care planning and decision making are required. The organization of care, development of guidelines and interventions to decrease caregiver burden in the EOL phase are critical as well.
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Planejamento Antecipado de Cuidados , Glioma , Cuidados Paliativos , Assistência Terminal , Cuidadores , Tomada de Decisões , Feminino , Glioma/patologia , Glioma/psicologia , Glioma/terapia , Humanos , Pessoa de Meia-Idade , Qualidade de VidaRESUMO
As there are, to date, few curative treatment options for many neurologic diseases, end of life (EOL) care is an important aspect of the treatment of neurologic patients. In the EOL phase, treatment should be aimed at relieving symptoms, maintaining quality of life, and facilitating a peaceful and dignified way of dying. Common signs and symptoms in the EOL phase of neurologic patients are raised intracranial pressure, seizures, confusion, cognitive deficits, and impaired motor function. Supportive treatment of these symptoms (such as analgesic drugs, dexamethasone, antiepileptic and neuroleptic drugs) is of major importance to maintain quality of life as long as possible. Another key aspect of EOL care is EOL decision making, such as withholding or withdrawing life-sustaining treatment, and palliative sedation. The main goal of EOL decision making is the prevention and relief of suffering, even if this might hasten death. Especially in advanced stages of many neurologic diseases, confusion, cognitive deficits, communication deficits, and decreasing levels of consciousness may impair the competence of patients to participate in EOL decision making. Given that patient autonomy is increasingly essential, advance care planning (ACP) at an early stage of the disease should be considered.
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Doenças do Sistema Nervoso/fisiopatologia , Doenças do Sistema Nervoso/terapia , Cuidados Paliativos , Planejamento Antecipado de Cuidados , Pesar , Humanos , Transtornos dos Movimentos/fisiopatologia , Transtornos dos Movimentos/terapia , Ordens quanto à Conduta (Ética Médica) , Assistência Terminal/psicologiaRESUMO
To develop, validate, and report on the use of a retrospective proxy-reported questionnaire measuring health-related quality of life (HRQoL) in the end-of-life (EOL) phase of high-grade glioma (HGG) patients. Items relevant for the defined construct were selected using existing questionnaires, topics identified as important in literature, and expert opinion (experienced neuro-oncologists and EOL experts). Psychometric properties, content validity and internal consistency, were determined and the questionnaire was subsequently adapted. Proxy-reported HRQoL data of HGG patients in the EOL, including changes over time, were analyzed. Twenty-nine items were selected covering seven domains; physical comfort, physical and cognitive functioning, psychological, social and spiritual well-being, and overall quality of life. Relatives of 83 deceased HGG patients completed the questionnaire. Content validity was assessed to be adequate. Internal consistency in the domains varied from reasonable to good. Two items were excluded due to poor psychometric properties. Symptom burden increased (p < 0.01), except for nausea (p = 0.058), as death approached. Cognitive, physical and psychological functioning deteriorated over time (all p < 0.01). Acceptance of disease seemed to increase slightly towards death, but this was not significant (p = 0.058). Participating in social activities and family life was rated as poor (≤ 50), whereas received support from their social environment and dying with dignity were rated as good (>50). Overall quality of life was rated as poor, mean (SD) of 29 (26). Measuring HRQoL at the EOL of HGG patients with a retrospective, proxy-reported questionnaire was feasible, yielding a validated instrument. HRQoL was reported as poor and deteriorated as death approached.
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Neoplasias Encefálicas/psicologia , Glioma/psicologia , Procurador/psicologia , Qualidade de Vida , Inquéritos e Questionários , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/diagnóstico , Transtornos Cognitivos/diagnóstico , Transtornos Cognitivos/etiologia , Feminino , Glioma/complicações , Glioma/diagnóstico , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/métodos , Reprodutibilidade dos Testes , Estudos RetrospectivosRESUMO
BACKGROUND: In the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patient's personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients. METHODS: We approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) health-related quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity. RESULTS: Relatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death. CONCLUSIONS: Physicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life.
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Neoplasias Encefálicas/psicologia , Glioma/psicologia , Direito a Morrer , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/normas , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Análise de Sobrevida , Adulto JovemRESUMO
BACKGROUND: Treatment of high-grade glioma (HGG) patients with anti-epileptic drugs (AEDs) has met with various side effects, such as cognitive deterioration. The cognitive effects of both older and newer AEDs in HGG patients are largely unknown. The aim of this study was to determine the effect of older and newer AEDs on cognitive performance in postoperative HGG patients. METHODS: We selected HGG patients from 3 separate cohorts for use of older, newer, or no AEDs, as they represented distinct treatment eras and provided the opportunity to compare older and newer AEDs. In all 3 cohorts, patients were included within 6 weeks following neurosurgery before the start of postoperative treatment. Cognitive functioning was evaluated by an extensive neuropsychological assessment, executed in 6 cognitive domains (attention, executive functioning, verbal memory, working memory, psychomotor functioning, and information processing speed). RESULTS: One hundred seventeen patients met the inclusion criteria; 44 patients used no AED, 35 were on monotherapy with a newer AED (all levetiracetam), and 38 were on monotherapy with an older AED (valproic acid or phenytoin). Patients on older and newer AEDs performed equally well as patients not on an AED, and patients on levetiracetam performed even better on verbal memory tests than patients not on an AED. Post-hoc analyses revealed that within the group using older AEDs, patients on valproic acid performed better than patients on phenytoin. CONCLUSIONS: Neither levetiracetam nor valproic acid was associated with additional cognitive deficits in HGG patients. Both AEDs even appeared to have a beneficial effect on verbal memory in these patients.
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Anticonvulsivantes/uso terapêutico , Neoplasias Encefálicas/complicações , Transtornos Cognitivos/tratamento farmacológico , Glioma/complicações , Transtornos da Memória/tratamento farmacológico , Piracetam/análogos & derivados , Aprendizagem Verbal/efeitos dos fármacos , Adolescente , Adulto , Idoso , Transtornos Cognitivos/diagnóstico , Transtornos Cognitivos/etiologia , Feminino , Humanos , Levetiracetam , Masculino , Transtornos da Memória/diagnóstico , Transtornos da Memória/etiologia , Pessoa de Meia-Idade , Gradação de Tumores , Testes Neuropsicológicos , Piracetam/uso terapêutico , Prognóstico , Estudos Prospectivos , Desempenho Psicomotor , Qualidade de Vida , Adulto JovemRESUMO
High-grade gliomas (HGG) are serious primary brain tumors that may prevent the patient from functioning normally in social, emotional and cognitive respect. Often the partner's role will convert to that of informal caregiver. Consequently, they may experience significant stress and reductions in caregiver mastery, negatively affecting their health-related quality of life (HRQOL). We aimed at (1) determining factors that impact HRQOL and mastery of caregivers of HGG patients, and (2) investigate if a structured intervention consisting of psychoeducation and cognitive behavioral therapy leads to improvements in the mental component of HRQOL and mastery of caregivers. Fifty-six patient-caregiver dyads were randomly assigned to the intervention group or the care as usual group. The intervention program consisted of six one-hour sessions with a psychologist. Participants completed questionnaires concerning their perceptions of the patients' HRQOL (SF-36), neurological functioning (BN20), and cognitive functioning (MOS), and concerning their own HRQOL (SF-36) and feelings of caregiver mastery (CMS) both at baseline (i.e. before randomization) and every 2 months thereafter until 8 months later, five times in total. Patients' HRQOL and neurological functioning were found to be related to HRQOL and feelings of mastery of the informal caregiver at baseline. The intervention helped caregivers in maintaining a stable level of HRQOL and improved feelings of mastery over an 8 month period. Our findings suggest that informal caregivers can benefit from a psychological intervention as it is a helpful tool in maintaining a stable level of mental functioning and caregiver mastery.
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Neoplasias Encefálicas/enfermagem , Neoplasias Encefálicas/psicologia , Cuidadores/psicologia , Glioma/enfermagem , Glioma/psicologia , Qualidade de Vida , Adulto , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Avaliação de Resultados em Cuidados de Saúde , Valor Preditivo dos Testes , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: This paper aims to study the value of MRI and Thallium 201 ((201)Tl) single-photon emission computed tomography (SPECT) in the prediction of overall survival (OS) in glioma patients treated with temozolomide (TMZ) and to evaluate timing of radiological follow-up. METHODS: We included patients treated with TMZ chemoradiotherapy for newly diagnosed glioblastoma multiforme (GBM) and with TMZ for recurrent glioma. MRIs and (201)Tl SPECTs were obtained at regular intervals. The value of both imaging modalities in predicting OS was examined using Cox regression analyses. RESULTS: Altogether, 138 MRIs and 113 (201)Tl SPECTs in 46 patients were performed. Both imaging modalities were strongly related to OS (P ≤ 0.02). In newly diagnosed GBM patients, the last follow-up MRI (i.e., after six adjuvant TMZ courses) and SPECT (i.e., after three adjuvant TMZ courses) were the strongest predictors of OS (P = 0.01). In recurrent glioma patients, baseline measurements appeared to be the most predictive of OS (P < 0.01). The addition of one imaging modality to the other did not contribute to the prediction of OS. CONCLUSIONS: Both MRI and (201)Tl SPECT are valuable in the prediction of OS. It is adequate to restrict to one of both modalities in the radiological follow-up during treatment. In the primary GBM setting, MRI after six adjuvant TMZ courses contributes significantly to the prediction of survival. In the recurrent glioma setting, baseline MRI appears to be a powerful predictor of survival, whereas follow-up MRIs during TMZ seem to be of little additional value.