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2.
Dementia (London) ; 23(1): 152-171, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37997896

ABSTRACT

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.


Subject(s)
Cognitive Dysfunction , Dementia , Humans , Dementia/psychology , Cognitive Dysfunction/psychology , Caregivers/psychology , Memory Disorders , Data Collection , Qualitative Research
3.
Tijdschr Gerontol Geriatr ; 54(2)2023 Jun 11.
Article in Dutch | MEDLINE | ID: mdl-37646355

ABSTRACT

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.


Subject(s)
Dementia , Terminal Care , Humans , Caregivers , Pamphlets , Delivery of Health Care , Dementia/therapy
4.
Age Ageing ; 52(1)2023 01 08.
Article in English | MEDLINE | ID: mdl-36626318

ABSTRACT

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.


Subject(s)
Dementia , Euthanasia , Physicians , Humans , Advance Directives , Qualitative Research , Netherlands , Dementia/diagnosis
5.
Age Ageing ; 51(9)2022 09 02.
Article in English | MEDLINE | ID: mdl-36057986

ABSTRACT

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.


Subject(s)
Dementia , Physicians , Aged , Dementia/diagnosis , Dementia/drug therapy , Humans , Practice Patterns, Physicians' , Psychotropic Drugs/adverse effects , Quality of Life
6.
Gerontol Geriatr Med ; 8: 23337214221094192, 2022.
Article in English | MEDLINE | ID: mdl-35434204

ABSTRACT

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.

7.
Article in English | MEDLINE | ID: mdl-35191093

ABSTRACT

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.


Subject(s)
COVID-19 , Dementia , Cohort Studies , Dementia/diagnosis , Dementia/drug therapy , Dementia/epidemiology , Humans , Longitudinal Studies , Nursing Homes , Pandemics , Psychomotor Agitation/diagnosis , Psychomotor Agitation/drug therapy , Psychomotor Agitation/epidemiology , Psychotropic Drugs/therapeutic use , Retrospective Studies , SARS-CoV-2
8.
J Am Med Dir Assoc ; 23(1): 1-6.e1, 2022 01.
Article in English | MEDLINE | ID: mdl-34848196

ABSTRACT

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.


Subject(s)
Advance Care Planning , COVID-19 , Humans , Nursing Homes , Pandemics/prevention & control , SARS-CoV-2
9.
Int Psychogeriatr ; 34(4): 391-398, 2022 04.
Article in English | MEDLINE | ID: mdl-33818339

ABSTRACT

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.


Subject(s)
COVID-19 , COVID-19/prevention & control , Communicable Disease Control , Delivery of Health Care/methods , Humans , Nursing Homes , Surveys and Questionnaires
10.
J Am Med Dir Assoc ; 23(1): 47-53.e2, 2022 01.
Article in English | MEDLINE | ID: mdl-34454919

ABSTRACT

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.


Subject(s)
Cerebral Small Vessel Diseases , Magnetic Resonance Imaging , Aged , Aged, 80 and over , Brain , Cross-Sectional Studies , Female , Humans , Male , Walking Speed
11.
Tijdschr Gerontol Geriatr ; 52(2)2021 Jun 09.
Article in Dutch | MEDLINE | ID: mdl-34498437

ABSTRACT

To anticipate future suffering due to dementia a growing number of people draft written advance euthanasia directives (AED). In actual practice the number of cases of euthanasia in advanced dementia is very limited. Dementia case managers are often closely involved since an early stage of the disease in the support and guidance of people with dementia and are well positioned to talk about the AED. This study aims to acquire insights into the way case managers deal with AEDs of people suffering from dementia. This qualitative study consists of two focus groups of ten case managers in total. Involvement of case managers was found to extend beyond discussing merely AEDs, to also the broader discussion of euthanasia and 'future euthanasia wishes' of patients with dementia. A thematic analysis of how case managers proceed with future euthanasia wishes yielded five themes: 1) Scenarios in practice; 2) Introduction of a written euthanasia directive as a conversation topic; 3) Guidance and support of the client and caregiver; 4) Cooperation with other health care workers; 5) Experienced dilemmas. The insights, provided by this study, into the role of case managers regarding the guidance of people with dementia and a future euthanasia wish contributes to a further optimization of the multidisciplinary collaboration between general practitioners and dementia case managers. Further research into the added value of this collaboration in dealing with these complicated issues around euthanasia in dementia care, is recommended.


Subject(s)
Case Managers , Dementia , Euthanasia , Advance Directives , Humans , Perception
12.
J Am Med Dir Assoc ; 21(12): 1774-1781.e2, 2020 12.
Article in English | MEDLINE | ID: mdl-33197412

ABSTRACT

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.


Subject(s)
COVID-19 , Nursing Homes , Organizational Policy , Visitors to Patients , Humans , Netherlands , Pandemics , Qualitative Research , SARS-CoV-2 , Surveys and Questionnaires
13.
CNS Oncol ; 4(5): 357-65, 2015.
Article in English | MEDLINE | ID: mdl-26509292

ABSTRACT

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.


Subject(s)
Brain Neoplasms/therapy , Glioma/therapy , Palliative Care , Terminal Care , Brain Neoplasms/complications , Brain Neoplasms/psychology , Decision Making , Glioma/complications , Glioma/psychology , Humans , Quality of Life , Terminal Care/standards
14.
BMJ Support Palliat Care ; 4(1): 77-80, 2014 Mar.
Article in English | MEDLINE | ID: mdl-24644775

ABSTRACT

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.


Subject(s)
Anticonvulsants/therapeutic use , Brain Neoplasms/epidemiology , Glioma/epidemiology , Seizures/drug therapy , Seizures/epidemiology , Terminal Care/methods , Cohort Studies , Female , Humans , Male , Middle Aged , Netherlands/epidemiology , Palliative Care/methods , Prevalence , Surveys and Questionnaires
15.
J Neurooncol ; 116(2): 283-90, 2014 Jan.
Article in English | MEDLINE | ID: mdl-24162875

ABSTRACT

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.


Subject(s)
Brain Neoplasms/psychology , Glioma/psychology , Proxy/psychology , Quality of Life , Surveys and Questionnaires , Terminal Care/psychology , Adult , Aged , Aged, 80 and over , Brain Neoplasms/complications , Brain Neoplasms/diagnosis , Cognition Disorders/diagnosis , Cognition Disorders/etiology , Female , Glioma/complications , Glioma/diagnosis , Humans , Male , Middle Aged , Psychometrics/methods , Reproducibility of Results , Retrospective Studies
16.
Support Care Cancer ; 22(3): 847-57, 2014 Mar.
Article in English | MEDLINE | ID: mdl-24337718

ABSTRACT

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.


Subject(s)
Advance Care Planning , Glioma , Palliative Care , Terminal Care , Caregivers , Decision Making , Female , Glioma/pathology , Glioma/psychology , Glioma/therapy , Humans , Middle Aged , Quality of Life
17.
Handb Clin Neurol ; 121: 1219-25, 2014.
Article in English | MEDLINE | ID: mdl-24365413

ABSTRACT

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.


Subject(s)
Nervous System Diseases/physiopathology , Nervous System Diseases/therapy , Palliative Care , Advance Care Planning , Grief , Humans , Movement Disorders/physiopathology , Movement Disorders/therapy , Resuscitation Orders , Terminal Care/psychology
18.
J Neurooncol ; 112(3): 403-11, 2013 May.
Article in English | MEDLINE | ID: mdl-23412776

ABSTRACT

Glioblastoma multiforme (GBM) still harbors a fatal prognosis. The involvement of the neurocognition and psyche poses unique challenges for care provision by relatives. We lack data about the caregivers' perspective on the end-of-life (EOL) phase of GBM patients to improve counseling and support. In this study we investigated the experiences of 52 caregivers of deceased GBM patients treated in Austria. We used a questionnaire developed by the University Medical Centre of Amsterdam for exploration of the EOL-phase in glioma patients. The caregivers (17 men, 34 women) completed the questionnaire in median three years after the patients' death. 29 % of caregivers reported that they felt incompletely prepared for their tasks, however, those with higher education levels felt significantly better informed. 29 % suffered from financial difficulties, which was associated with burnout (60 %) and reduced quality of life (QOL). The patients' most common symptoms reported by caregivers were fatigue (87 %), reduced consciousness (81 %) and aphasia (77 %). 22 % of patients were bedbound during their last three months increasing to 80 % in the last week of life. The reported QOL of caregivers was very low and did not differ between caregivers of patients, who died at home (40 %) and caregivers of patients, who died in hospital (46 %). The caregiver reported that their QOL was only slightly better than the QOL they attributed to the patients. Furthermore, the high frequency of financial difficulties, burnout symptoms and feelings of insufficient information emphasize the urgent need for support and training dedicated to caregivers.


Subject(s)
Brain Neoplasms , Caregivers/psychology , Glioblastoma , Quality of Life , Terminal Care/psychology , Adult , Aged , Aged, 80 and over , Brain Neoplasms/mortality , Brain Neoplasms/psychology , Caregivers/statistics & numerical data , Female , Glioblastoma/mortality , Glioblastoma/psychology , Humans , Male , Middle Aged , Surveys and Questionnaires , Terminal Care/statistics & numerical data
19.
Oncologist ; 18(2): 198-203, 2013.
Article in English | MEDLINE | ID: mdl-23335620

ABSTRACT

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.


Subject(s)
Brain Neoplasms/psychology , Glioma/psychology , Right to Die , Terminal Care/psychology , Adult , Aged , Aged, 80 and over , Decision Making , Female , Hospice Care/psychology , Hospice Care/standards , Humans , Male , Middle Aged , Surveys and Questionnaires , Survival Analysis , Young Adult
20.
Neuro Oncol ; 15(2): 216-23, 2013 Feb.
Article in English | MEDLINE | ID: mdl-23233537

ABSTRACT

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.


Subject(s)
Anticonvulsants/therapeutic use , Brain Neoplasms/complications , Cognition Disorders/drug therapy , Glioma/complications , Memory Disorders/drug therapy , Piracetam/analogs & derivatives , Verbal Learning/drug effects , Adolescent , Adult , Aged , Cognition Disorders/diagnosis , Cognition Disorders/etiology , Female , Humans , Levetiracetam , Male , Memory Disorders/diagnosis , Memory Disorders/etiology , Middle Aged , Neoplasm Grading , Neuropsychological Tests , Piracetam/therapeutic use , Prognosis , Prospective Studies , Psychomotor Performance , Quality of Life , Young Adult
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