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1.
J Palliat Care ; : 8258597241239614, 2024 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-38515425

RESUMO

Objective(s): Unmet needs of relatives of patients with advanced cancer not only reduce their own health-related quality of life, but may also negatively affect patients' health outcomes. The aim of this study was to assess changes in relatives' unmet needs of patients with advanced cancer in the last year of life and to identify differences in unmet needs by gender and type of relationship. Methods: Relatives of patients with advanced cancer in the Netherlands were included in a prospective, longitudinal, observational study. Relatives' unmet needs were measured every 3 months with an adapted version of the Problems and Needs in Palliative Care (PNPC) questionnaire Caregiver form (44 items, 12 domains). Questionnaires completed in the patients' last year of life were analyzed. Change of unmet needs in the last year, and differences in unmet needs by gender and type of relationship were analyzed. Results: A total of 409 relatives were included with a median of 4 unmet needs in the patient's last year. Unmet needs were most prevalent at all time points during the last year in the domains "caring for the patient" (highest need = 35%) and "psychological issues" (highest need = 40%). The number of unmet needs of relatives did not change significantly during the last year of life (P=.807). There were no significant differences in the number of unmet needs between male and female partners and between partners and other relatives. Conclusion: The most unmet needs for relatives were in the domains "caring for the patient" and "psychological issues." Professional support should focus on these items. Within these domains, it seems especially important that relatives get more knowledge and support about what scenarios to expect and how to deal with them.

2.
Support Care Cancer ; 32(4): 214, 2024 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-38446248

RESUMO

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.


Assuntos
Luto , Neoplasias , Humanos , Estudos Prospectivos , Pesar , Comunicação
3.
Acta Obstet Gynecol Scand ; 103(4): 751-756, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38298117

RESUMO

The global incidence of cancer is increasing, including its incidence in women of reproductive age. Still, physicians encounter this situation rarely, which could lead to substandard care. This research sought to explore opportunities to improve future care for pregnant women with cancer, by describing the outcomes of a survey distributed to physicians all over the world focusing on clinical experience with pregnant women with cancer, the organization of care and current gaps in knowledge. We included 249 responses from physicians working across 36 countries. Responses demonstrate a wide variation in the organization of care - generally lacking centralization, and the physicians' acknowledgement of insufficient knowledge on the management of pregnant women with cancer. There is a need for improvement through national centralization and/or establishing advisory boards for cancer in pregnancy. Seeing the paucity of cancer in pregnancy experience, the importance of global multidisciplinary collaboration is emphasized.


Assuntos
Neoplasias , Médicos , Feminino , Gravidez , Humanos , Gestantes , Inquéritos e Questionários , Neoplasias/terapia
4.
Artigo em Inglês | MEDLINE | ID: mdl-38290815

RESUMO

Background Delirium is a debilitating disorder with high prevalence near the end of life, impacting quality of life of patients and their relatives. Timely recognition of delirium can lead to prevention and/or better treatment of delirium. According to current hypotheses delirium is thought to result from aberrant inflammation and neurotransmission, with a possible role for neuronal damage. Neurofilament light chain (NfL) is a protein biomarker in body fluids that is unique to neurons, with elevated levels when neurons are damaged, making NfL a viable biomarker for early detection of delirium. This narrative review summarises current research regarding the pathophysiology of delirium and the potential of NfL as a susceptibility biomarker for delirium and places this in the context of care for patients with advanced cancer.Results Six studies were conducted exclusively on NfL in patients with delirium. Three of these studies demonstrated that high plasma NfL levels preoperatively predict delirium in older adult patients postoperatively. Two studies demonstrated that high levels of NfL in intensive care unit (ICU) patients are correlated with delirium duration and severity. One study found that incident delirium in older adult patients was associated with increased median NfL levels during hospitalisation.Conclusions Targeted studies are required to understand if NfL is a susceptibility biomarker for delirium in patients with advanced cancer. In this palliative care context, better accessible matrices, such as saliva or urine, would be helpful for repetitive testing. Improvement of biological measures for delirium can lead to improved early recognition and lay the groundwork for novel therapeutic strategies.

5.
Palliat Med ; 38(1): 140-149, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38142283

RESUMO

BACKGROUND: The COVID-19 pandemic impacted cancer diagnosis and treatment. However, little is known about end-of-life cancer care during the pandemic. AIM: To investigate potentially inappropriate end-of-life hospital care for cancer patients before and during the COVID-19 pandemic. DESIGN: Retrospective population-based cohort study using data from the Netherlands Cancer Registry and the Dutch National Hospital Care Registration. Potentially inappropriate care in the last month of life (chemotherapy administration, >1 emergency room contact, >1 hospitalization, hospitalization >14 days, intensive care unit admission or hospital death) was compared between four COVID-19 periods and corresponding periods in 2018/2019. PARTICIPANTS: A total of 112,919 cancer patients (⩾18 years) who died between January 2018 and May 2021 were included. RESULTS: Fewer patients received potentially inappropriate end-of-life care during the COVID-19 pandemic compared to previous years, especially during the first COVID-19 peak (22.4% vs 26.0%). Regression analysis showed lower odds of potentially inappropriate end-of-life care during all COVID-19 periods (between OR 0.81; 95% CI 0.74-0.88 and OR 0.92; 95% CI 0.87-0.97) after adjustment for age, sex and cancer type. For the individual indicators, fewer patients experienced multiple or long hospitalizations, intensive care unit admission or hospital death during the pandemic. CONCLUSIONS: Cancer patients received less potentially inappropriate end-of-life care during the COVID-19 pandemic. Because several factors may have contributed, it is unclear whether this reflects better quality care. However, these findings raise important questions about what pandemic-induced changes in care practices can help provide appropriate end-of-life care for future patients in the context of increasing patient numbers and limited resources.


Assuntos
COVID-19 , Neoplasias , Assistência Terminal , Humanos , Pandemias , Estudos Retrospectivos , Estudos de Coortes , Neoplasias/tratamento farmacológico , Hospitalização , Morte , Hospitais , Cuidados Paliativos
6.
Support Care Cancer ; 31(12): 731, 2023 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-38055062

RESUMO

PURPOSE: Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with the well-being of relatives is scarce. The aim of this systematic literature review was to evaluate the association between potentially inappropriate end-of-life cancer care and relatives' well-being. METHODS: We conducted a systematic search and review, and reported according to the PRISMA guideline, on the association between potentially inappropriate end-of-life cancer care and well-being of relatives before and after the death of their loved one. Pubmed, PsycInfo, Embase, and CINAHL were searched for studies published from January 2000 to July 2022. Studies' quality was assessed using the Critical Appraisal Checklists from the Joanne Briggs Institute (JBI). RESULTS: We identified eight studies including 10,062 relatives (59-79% female, mean age 46-61 years, 29-72% partner). Potentially inappropriate end-of-life cancer care was associated with poorer well-being of relatives including lower quality of life, higher burden of depressive symptoms, more regret, and more feelings of unpreparedness for the patient's death. CONCLUSION: Potentially inappropriate cancer care at the end-of-life is associated with poorer well-being of relatives before and after the death of their loved one. This emphasizes the importance of avoiding potentially inappropriate end-of-life cancer care, as it is both associated with poorer outcomes for relatives and patients. However, the number of studies examining this association is small, and more research is needed in this area.


Assuntos
Qualidade de Vida , Assistência Terminal , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Lista de Checagem , Serviço Hospitalar de Emergência , Morte
7.
Psychooncology ; 32(12): 1858-1866, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37882097

RESUMO

OBJECTIVE: Advanced cancer has a major impact on both patients and their relatives. To allow for personalized support, it is important to recognize which relatives will experience a decline in emotional functioning during the patient's last year of life, when this decline will occur, and what factors are associated with it. This study aimed to examine the trajectory of emotional functioning of relatives during that time and the characteristics associated with changes in this trajectory. METHODS: A prospective, longitudinal, multicenter, observational study in patients with advanced cancer and their relatives was conducted (eQuiPe). We analyzed relatives' changes in emotional functioning in the patient's last year using the EORTC QLQ-C30 and assessed associations with sociodemographic and care characteristics using multivariable mixed-effects analysis. RESULTS: 409 relatives completed ≥1 questionnaires during the patient's last year of life. Mean age was 64 years, 61% were female and 75% were the patient's partner. During this year, mean emotional functioning declined significantly over time from 73.9 to 64.6 (p = 0.023, effect size = 0.43). The type of relationship between relatives and patients (p = 0.002), patient' sleep problems (p = 0.033), and continuity of care (p = 0.002) were significantly associated with changes in emotional functioning. CONCLUSIONS: Relatives' emotional functioning declined during the patient's last year of life. Support for them, especially partners and relatives of patients with sleep problems, is important. Relatives who experienced more continuity of care had a less steep decline in emotional functioning.


Assuntos
Neoplasias , Transtornos do Sono-Vigília , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Estudos Prospectivos , Qualidade de Vida , Emoções , Neoplasias/terapia , Inquéritos e Questionários
8.
Palliat Med ; 37(3): 329-342, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36734538

RESUMO

BACKGROUND: Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the '10/40 Model' of care for the dying, in 2013. The model includes 10 'Key Principles' that underpin 40 'Core Outcomes' of care. It was necessary to update consensus on the 10/40 Model to ensure that it remains clinically relevant and applicable for practice. AIM: Update international consensus on the content of the 10/40 Model. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of the next. Free text comments were also sought. Three rounds of Delphi were undertaken. SETTING/PARTICIPANTS: A total of 160 participants took part in round 1, representing 31 countries; 103 in round 2 and 57 in round 3. Participants included doctors, nurses, researchers and allied health professionals, with over 80% working predominantly in palliative care (general/specialist not specified). RESULTS: Minor amendments were made to seven items related to: recognition of the dying phase, ongoing assessment of the patient's condition, communication with patients about the plan of care and care in the immediate time after the death of a patient. Results supported the addition of a sub core outcome for care provided after death. CONCLUSION: The updated 10/40 Model will guide the delivery of high-quality care for dying patients regardless of the location of care. Further work should focus on increasing lay participation and participation from low income and culturally diverse countries.


Assuntos
Cuidados Paliativos , Pacientes , Humanos , Consenso , Técnica Delphi , Qualidade da Assistência à Saúde
9.
BMJ Support Palliat Care ; 13(1): 121-124, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36410945

RESUMO

OBJECTIVE: Provide insight in the prevalence of symptoms in patients who are in the last days of life. METHODS: A retrospective descriptive analysis of data on patients who died between 2012 and 2019 at the age of 18 or older in 1 of 20 Dutch healthcare facilities, including hospitals, inpatient hospices and long-term care facilities. We analysed data from 4 hourly registrations in the Care Programme for the Dying Person, to assess for how many patients symptom-related goals of care were not achieved. We looked at the first 4 hours episode after the start of the Care Programme and the last 4 hours episode prior to death. RESULTS: We analysed records of 2786 patients. In the first 4 hours episode, at least one symptom-related care goal was not achieved for 28.5%-42.8% of patients, depending on the care setting. In the last 4 hours episode, these percentages were 17.5%-26.9%. Care goals concerning pain and restlessness were most often not achieved: percentages varied from 7.3% to 20.9% for pain and from 9.3% to 21.9% for restlessness. CONCLUSIONS: Symptom control at the end of life is not optimal in a substantial minority of patients. Systematic assessment and attention as well as further research on symptom management are of the essence.


Assuntos
Assistência Terminal , Humanos , Estudos Retrospectivos , Agitação Psicomotora , Cuidados Paliativos , Dor
11.
Psychooncology ; 31(10): 1719-1727, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-36097376

RESUMO

OBJECTIVE: The death of a loved one is considered to be the most stressful of all life events. However, the impact of bereavement on quality of life varies between individuals. The aim of our study was to assess emotional functioning (EF), which is a domain of quality of life, of bereaved relatives after the death of their loved one and its associated factors. METHOD: A prospective, longitudinal, multicenter, observational study on quality of care and quality of life of patients with advanced cancer and their relatives was conducted (eQuiPe). The association between EF of relatives during bereavement and the following factors was investigated: gender, type of relationship, educational level, pre-bereavement emotional and social functioning and global quality of life, social support pre- and during bereavement, anticipatory complicated grief, support of healthcare professionals during bereavement, age of patient and bereaved relative and duration of survival after primary cancer diagnosis. RESULTS: 150 bereaved relatives completed the bereavement questionnaire. In 41% of the bereaved relatives EF was ≤71, indicating clinically relevant low EF. Multivariable logistic regression showed that females experienced more often emotional problems (OR = 2.82). Emotional functioning pre-bereavement (OR = 0.96) and social support during bereavement (OR = 0.97) were associated with low EF during bereavement. CONCLUSIONS: Almost half of the bereaved relatives of patients with advanced cancer experienced low EF and this was associated with low EF pre-bereavement and low social support during bereavement. Support for relatives should be initiated before the patient's death. Future research is needed to investigate the impact of such support on relatives' wellbeing during bereavement.


Assuntos
Luto , Neoplasias , Família/psicologia , Feminino , Pesar , Humanos , Estudos Prospectivos , Qualidade de Vida
12.
Cells ; 11(17)2022 08 28.
Artigo em Inglês | MEDLINE | ID: mdl-36078078

RESUMO

Cachexia is a metabolic syndrome consisting of massive loss of muscle mass and function that has a severe impact on the quality of life and survival of cancer patients. Up to 20% of lung cancer patients and up to 80% of pancreatic cancer patients are diagnosed with cachexia, leading to death in 20% of them. The main drivers of cachexia are cytokines such as interleukin-6 (IL-6), tumor necrosis factor-alpha (TNF-α), macrophage inhibitory cytokine 1 (MIC-1/GDF15) and transforming growth factor-beta (TGF-ß). Besides its double-edged role as a tumor suppressor and activator, TGF-ß causes muscle loss through myostatin-based signaling, involved in the reduction in protein synthesis and enhanced protein degradation. Additionally, TGF-ß induces inhibin and activin, causing weight loss and muscle depletion, while MIC-1/GDF15, a member of the TGF-ß superfamily, leads to anorexia and so, indirectly, to muscle wasting, acting on the hypothalamus center. Against this background, the blockade of TGF-ß is tested as a potential mechanism to revert cachexia, and antibodies against TGF-ß reduced weight and muscle loss in murine models of pancreatic cancer. This article reviews the role of the TGF-ß pathway and to a minor extent of other molecules including microRNA in cancer onset and progression with a special focus on their involvement in cachexia, to enlighten whether TGF-ß and such other players could be potential targets for therapy.


Assuntos
Caquexia , Neoplasias Pancreáticas , Fator de Crescimento Transformador beta , Animais , Caquexia/metabolismo , Humanos , Camundongos , Neoplasias Pancreáticas/complicações , Neoplasias Pancreáticas/metabolismo , Qualidade de Vida , Fator de Crescimento Transformador beta/metabolismo , Fatores de Crescimento Transformadores , Neoplasias Pancreáticas
13.
Curr Oncol ; 29(9): 6186-6202, 2022 08 27.
Artigo em Inglês | MEDLINE | ID: mdl-36135055

RESUMO

Evidence on the cost-effectiveness of eHealth in palliative care is scarce. Oncokompas, a fully automated behavioral intervention technology, aims to support self-management in cancer patients. This study aimed to assess the cost-utility of the eHealth application Oncokompas among incurably ill cancer patients, compared to care as usual. In this randomized controlled trial, patients were randomized into the intervention group (access to Oncokompas) or the waiting-list control group (access after three months). Healthcare costs, productivity losses, and health status were measured at baseline and three months. Intervention costs were also taken into account. Non-parametric bootstrapping with 5000 replications was used to obtain 95% confidence intervals around the incremental costs and quality-adjusted life years (QALYs). A probabilistic approach was used because of the skewness of cost data. Altogether, 138 patients completed the baseline questionnaire and were randomly assigned to the intervention group (69) or the control group (69). In the base case analysis, mean total costs and mean total effects were non-significantly lower in the intervention group (-€806 and -0.01 QALYs). The probability that the intervention was more effective and less costly was 4%, whereas the probability of being less effective and less costly was 74%. Among patients with incurable cancer, Oncokompas does not impact incremental costs and seems slightly less effective in terms of QALYs, compared to care as usual. Future research on the costs of eHealth in palliative cancer care is warranted to assess the generalizability of the findings of this study.


Assuntos
Neoplasias , Autogestão , Telemedicina , Análise Custo-Benefício , Humanos , Neoplasias/terapia , Anos de Vida Ajustados por Qualidade de Vida , Autogestão/métodos , Telemedicina/métodos
14.
Eur J Cancer ; 171: 13-21, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35696885

RESUMO

BACKGROUND: Most physicians encounter pregnant women with cancer incidentally, leading to a lack of expertise or confidence to inform and treat these patients based on the most recent guidelines and expert opinions. In the Netherlands, a national multidisciplinary tumour board for cancer, infertility and pregnancy (CIP-MDT) was founded in December 2012, including 35 specialists from a variety of disciplines. This study evaluates the frequency of consultation of the CIP-MDT, the types of questions asked and the satisfaction of consulting physicians with its existence. METHODOLOGY: Of all requests to the CIP-MDT between December 2012 and June 2021, tumour type, stage, gestational age at diagnosis and recommendations were collected and analysed. For evaluating the methods of the CIP-MDT, a survey with questions regarding experiences with the CIP-MDT and its impact on treatment decisions was sent out to physicians that consulted the CIP-MDT. RESULTS: Recommendations (n = 213) concerned preferred and safest options for imaging, treatment options during pregnancy, possible effects on the child and fertility preserving options. Most frequently discussed malignancies were breast cancer (n = 66), cervical cancer (n = 34), haematological malignancies (n = 32) and melanoma (n = 21). The questionnaire was completed by 54% of the physicians (n = 50). Satisfaction with the recommendations of the CIP-MDT was high, and 94% of the physicians informed their patients about consulting the CIP-MDT and felt supported by the received recommendations. DISCUSSION: The national Dutch CIP-MDT contributes to a high level of satisfaction among physicians requesting advice. Further research should be executed to confirm that a CIP-MDT improves the outcomes for pregnant women and their children.


Assuntos
Neoplasias da Mama , Equipe de Assistência ao Paciente , Criança , Feminino , Humanos , Países Baixos/epidemiologia , Gravidez , Projetos de Pesquisa
15.
Lancet Reg Health Eur ; 18: 100390, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35496496

RESUMO

Background: Many patients with incurable cancer have symptoms affecting their health-related quality of life. The eHealth application 'Oncokompas' supports patients to take an active role in managing their palliative care needs, to reduce symptoms and improve health-related quality of life (HRQOL). This randomized controlled trial was conducted to determine the efficacy of Oncokompas compared to care as usual among incurably ill cancer patients with a life expectancy of more than three months. Methods: Patients were recruited in six hospitals in the Netherlands. Eligible patients were randomly assigned to the intervention (direct access to Oncokompas) or the control group (access to Oncokompas after three months). The primary outcome measure was patient activation (i.e., patients' knowledge, skills and confidence for self-management). Secondary outcomes were general self-efficacy and HRQOL. Measures were assessed at baseline, two weeks after randomization, and three months after the baseline measurement. Linear mixed models were used to compare longitudinal changes between both groups from baseline to the three-month follow-up. Findings: In total, 219 patients were eligible of which 138 patients completed the baseline questionnaire (response rate 63%), and were randomized to the intervention (69) or control group (69). There were no significant differences between the intervention and control group over time in patient activation (estimated difference in change T0-T2; 1·8 (90% CI: -1·0 to 4·7)), neither in general self-efficacy and HRQOL. Of the patients in the intervention group who activated their account, 74% used Oncokompas as intended. The course of patient activation, general self-efficacy, and HRQOL was not significantly different between patients who used Oncokompas as intended versus those who did not. Interpretation: Among incurably ill cancer patients with a life expectancy of more than three months and recruited in the hospital setting, Oncokompas did not significantly improve patient activation, self-efficacy, or HRQOL. Funding: ZonMw, Netherlands Organization for Health Research and Development (844001105).

16.
J Geriatr Oncol ; 13(1): 53-59, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34366274

RESUMO

OBJECTIVES: Medications at the end of life should be used for symptom control. Medications which potential adverse effects outweigh their expected benefits are called 'potentially inappropriate medications' (PIMs). PIMs are related with adverse drug events and reduced quality of life. In this study, we investigated to what extent PIMs are dispensed to older patients with lung cancer in the last month of life. METHODS: We selected patients with lung cancer, aged 65+, diagnosed between 2009 and 2014, and who died before April 1st 2015 from the population-based Netherlands Cancer Registry (NCR). The NCR is linked to the PHARMO Database Network, that includes medications dispensed by community pharmacies in the Netherlands. The eight PIM groups were based on the OncPal Deprescribing Guideline: aspirin, dyslipidaemia medications, antihypertensives, osteoporosis medications, peptic ulcer prophylaxis, oral hypoglycaemics, vitamins and minerals. RESULTS: Data of 7864 patients with lung cancer were analyzed. Median age was 74 year (IQR = 70-79) and 67% was male. 45% of all patients received at least one PIM in their last month of life. Taking into account all dispensed medications, patients receiving PIMs received more different medications compared to those receiving no PIMs, respectively 10 (SD = 5) vs. 3 (SD = 4) different medications (P < 0.001). CONCLUSION: Almost half of the older patients with lung cancer in the Netherlands received PIMs in their last month of life. Since PIM use is associated with reduced quality of life, it is important that health care professionals continue to critically assess which medication can be discontinued at the end of life.


Assuntos
Neoplasias Pulmonares , Lista de Medicamentos Potencialmente Inapropriados , Idoso , Morte , Humanos , Prescrição Inadequada/prevenção & controle , Neoplasias Pulmonares/tratamento farmacológico , Masculino , Qualidade de Vida
17.
BMC Palliat Care ; 20(1): 110, 2021 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-34271885

RESUMO

BACKGROUND: Antithrombotics are frequently prescribed for patients with a limited life expectancy. In the last phase of life, when treatment is primarily focused on optimizing patients' quality of life, the use of antithrombotics should be reconsidered. METHODS: We performed a secondary analysis of a retrospective review of 180 medical records of patients who had died of a malignant or non-malignant disease, at home, in a hospice or in a hospital, in the Netherlands. All medication prescriptions and clinical notes of patients using antithrombotics in the last three months of life were reviewed manually. We subsequently developed case vignettes based on a purposive sample, with variation in setting, age, gender, type of medication, and underlying disease. RESULTS: In total 60% (n=108) of patients had used antithrombotics in the last three months of life. Of all patients using antithrombotics 33.3 % died at home, 21.3 % in a hospice and 45.4 % in a hospital. In total, 157 antithrombotic prescriptions were registered; 30 prescriptions of vitamin K antagonists, 60 of heparins, and 66 of platelet aggregation inhibitors. Of 51 patients using heparins, 32 only received a prophylactic dose. In 75.9 % of patients antithrombotics were continued until the last week before death. Case vignettes suggest that inability to swallow, bleeding complications or the dying phase were important factors in making decisions about the use of antithrombotics. CONCLUSIONS: Antithrombotics in patients with a life limiting disease are often continued until shortly before death. Clinical guidance may support physicians to reconsider (dis)continuation of antithrombotics and discuss this with the patient.


Assuntos
Fibrinolíticos , Cuidados Paliativos na Terminalidade da Vida , Morte , Fibrinolíticos/uso terapêutico , Humanos , Qualidade de Vida , Estudos Retrospectivos
18.
Palliat Med ; 35(8): 1502-1507, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34282688

RESUMO

BACKGROUND: The death of a loved one is considered as one of the most stressful life events. During the COVID-19 pandemic, grief processes are potentially affected by measures such as social distancing and self-quarantine. AIM: The aim of this study was to give insight in the impact of the COVID-19 pandemic on quality of life, social support, and self-care of bereaved relatives of people with advanced cancer in order to evaluate whether care for bereaved relatives during the COVID-19 pandemic should be improved. DESIGN: A cross-sectional analysis using data from bereaved relatives of a prospective, longitudinal, multicenter, observational study on quality of care and quality of life of people with advanced cancer and their (bereaved) relatives (eQuiPe). SETTING/PARTICIPANTS: Quality of life, social support, and self-care of bereaved relatives who completed a questionnaire within 3-6 months after their relative died during COVID-19 (April-November 2020) were compared with bereaved relatives who completed this questionnaire pre-COVID-19 (April-November 2019). RESULTS: Ninety-one bereaved relatives were included in the analysis, 44 bereaved relatives completed the questionnaire pre-COVID-19 and 47 during COVID-19. The median age of the participants was 65 (IQR = 14) years and 58% were female. There were no significant differences between the pre-COVID-19 and during COVID-19 bereaved relatives in quality of life (68 vs 69), social support (17 vs 18), and self-care (20 vs 19). CONCLUSIONS: On the short-term, the COVID-19 pandemic did not have significant impact on bereaved relatives' wellbeing. However, long-term impact of the pandemic on their wellbeing should be assessed.


Assuntos
Luto , COVID-19 , Adolescente , Estudos Transversais , Família , Feminino , Humanos , Pandemias , Estudos Prospectivos , Qualidade de Vida , SARS-CoV-2 , Inquéritos e Questionários
19.
BMC Palliat Care ; 20(1): 81, 2021 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-34090394

RESUMO

BACKGROUND: In the Netherlands, healthcare professionals attending patients in the last phase of life, can consult an expert palliative care team (PCT) in case of complex problems. There are two types of PCTs: regional PCTs, which are mainly consulted by general practitioners, and hospital PCTs, which are mainly consulted by healthcare professionals in the hospital. Integration of these PCTs is expected to facilitate continuity of care for patients receiving care in different settings. We studied facilitators and barriers in the process of developing and implementing an integrated transmural palliative care consultation service. METHODS: A multiple case study was performed in four palliative care networks in the southwest Netherlands. We aimed to develop an integrated transmural palliative care consultation service. Researchers were closely observing the process and participated in project team meetings. A within-case analysis was conducted for each network, using the Consolidated Framework for Implementation Research (CFIR). Subsequently, all findings were pooled. RESULTS: In each network, project team members thought that the core goal of a transmural consultation service is improvement of continuity of palliative care for patients throughout their illness trajectory. It was nevertheless a challenge for hospital and non-hospital healthcare professionals to arrive at a shared view on goals, activities and working procedures of the transmural consultation service. All project teams experienced the lack of evidence-based guidance on how to organise the service as a barrier. The role of the management of the involved care organisations was sometimes perceived as unsupportive, and different financial reimbursement systems for hospital and out-of-hospital care made implementation of a transmural consultation service complex. Three networks managed to develop and implement a transmural service at some level, one network did not manage to do so. CONCLUSIONS: Healthcare professionals are motivated to collaborate in a transmural palliative care consultation service, because they believe it can contribute to high-quality palliative care. However, they need more shared views on goals and activities of a transmural consultation service, more guidance on organisational issues and appropriate financing. Further research is needed to provide evidence on benefits and costs of different models of integrated transmural palliative care consultation services.


Assuntos
Clínicos Gerais , Cuidados Paliativos , Humanos , Países Baixos , Qualidade da Assistência à Saúde , Encaminhamento e Consulta
20.
Cancers (Basel) ; 13(11)2021 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-34070954

RESUMO

The number of patients that can no longer be cured but may expect to live with their cancer diagnosis for a substantial period is increasing. These patients with 'prolonged incurable cancer' are often overlooked in research and clinical practice. Patients encounter problems that are traditionally seen from a palliative or survivorship perspective but this may be insufficient to cover the wide range of physical and psychosocial problems that patients with prolonged incurable cancer may encounter. Elements from both fields should, therefore, be delivered concordantly to further optimize care pathways for these patients. Furthermore, to ensure future high-quality care for this important patient population, enhanced clinical awareness, as well as further research, are urgently needed.

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