RESUMO
BACKGROUND: The effectiveness of generalist palliative care interventions in hospitals is unknown. AIM: This study aimed to explore the impact of a palliative care case management intervention for patients with gastrointestinal cancer (PalMaGiC) on hospital admissions, healthcare use, and place of death. DESIGN: This was a register-based cohort study analyzing data from the Danish Register on Causes of Death, the Danish National Patient Register, and the Danish Palliative Database. SETTING/PARTICIPANTS: Deceased patients with gastrointestinal cancer from 2010 to 2020 exposed to PalMaGiC were compared over three periods of time to patients receiving standard care. RESULTS: A total of 43,969 patients with gastrointestinal cancers were included in the study, of whom 1518 were exposed to PalMaGiC. In the last 30 days of life, exposed patients were significantly more likely to be hospitalized (OR of 1.62 (95% CI 1.26-2.01)), spend more days at the hospital, estimate of 1.21 (95% CI 1.02-1.44), and have a higher number of hospital admissions (RR of 1.13 (95% CI 1.01-1.27)), and were more likely to die at the hospital (OR of 1.94 (95% CI 1.55-2.44)) with an increasing trend over time. No differences were found for hospital healthcare use. CONCLUSION: Patients exposed to the PalMaGiC intervention had a greater likelihood of hospitalizations and death at the hospital compared to unexposed patients, despite the opposite intention. Sensitivity analyses show that regional differences may hold some of the explanation for this. Future development of generalist palliative care in hospitals should focus on integrating a home-based approach, community care, and PC physician involvement.
Assuntos
Neoplasias Gastrointestinais , Cuidados Paliativos , Sistema de Registros , Humanos , Neoplasias Gastrointestinais/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Masculino , Feminino , Dinamarca , Idoso , Sistema de Registros/estatística & dados numéricos , Estudos de Coortes , Idoso de 80 Anos ou mais , Pessoa de Meia-Idade , Hospitalização/estatística & dados numéricosRESUMO
BACKGROUND: We lack knowledge of which factors are associated with the risk of developing complex palliative care needs. The aim of this study was to investigate the associations between patient-reported health-related quality of life and subsequent referral to specialized palliative care (SPC) and hospital utilization. METHODS: This was a prospective single-center cohort study. Data on patient-reported outcomes were collected through the European Organization of Research and Treatment of Cancer Questionnaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the time of diagnosis. Covariates and hospital utilization outcomes were collected from medical records. Adjusted logistic and Poisson regression were applied in the analyses. Participants were newly diagnosed with incurable gastrointestinal cancer and affiliated with a palliative care case management intervention established in a gastroenterology department. RESULTS: Out of 397 patients with incurable gastrointestinal cancer, 170 were included in the study. Patients newly diagnosed with incurable gastrointestinal cancer experienced a substantial burden of symptoms. Pain was significantly associated with subsequent referral to SPC (OR 1.015; 95% CI 1.001-1.029). Patients with lower education levels (OR 0.210; 95% CI 0.056-0.778) and a Charlson Comorbidity Index score of 2 or more (OR 0.173; 95% CI 0.041-0.733) were less likely to be referred to SPC. Pain (IRR 1.011; 95% CI 1.005-1.018), constipation (IRR 1.009; 95% CI 1.004-1.015), and impaired overall quality of life (IRR 0.991; 95% CI 0.983-0.999) were significantly associated with increased risk of hospital admissions. CONCLUSION: The study indicates a need for interventions in hospital departments to identify and manage the substantial symptom burden experienced by patients, provide palliative care, and ensure timely referral to SPC.
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Neoplasias Gastrointestinais , Hospitalização , Cuidados Paliativos , Qualidade de Vida , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Masculino , Estudos Prospectivos , Feminino , Neoplasias Gastrointestinais/terapia , Idoso , Pessoa de Meia-Idade , Hospitalização/estatística & dados numéricos , Estudos de Coortes , Inquéritos e Questionários , Idoso de 80 Anos ou mais , Encaminhamento e Consulta/estatística & dados numéricos , Medidas de Resultados Relatados pelo Paciente , AdultoRESUMO
Background The Domus study, a randomized controlled trial (RCT), evaluated the effect of home-based specialized palliative care (SPC) reinforced with a psychological intervention for the patient-caregiver dyad on increasing advanced cancer patients' time spent at home, as opposed to hospitalized, and the number of home deaths. As palliative care extends to include support for patients' families and may thus assist caregivers and decrease demands on them, in this study we evaluated a secondary outcome, caregiver burden.Material and Methods Patients with incurable cancer and their caregivers were randomized (1:1) to care as usual or home-based SPC. Caregiver burden was assessed using the Zarit Burden Interview (ZBI) at baseline and 2, 4, 8 weeks and 6 months after randomization. Intervention effects were assessed in mixed effects models.Results A total of 258 caregivers were enrolled. Eleven per cent of informal caregivers experienced severe caregiver burden at baseline. Caregiver burden increased significantly over time in both groups (p = 0.0003), but no significant effect of the intervention was seen on overall caregiver burden (p = 0.5046) or burden subscales measuring role and personal strain.Conclusion In line with the majority of previous RCTs, the Domus intervention was not able to significantly reduce caregiver burden. Future interventions should consider targeting only caregivers reporting the greatest caregiver burden.
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Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Sobrecarga do Cuidador , Intervenção Psicossocial , Cuidadores/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Qualidade de VidaRESUMO
BACKGROUND: Many elderly people wish to die at home but end up dying at the hospital. If the patient wishes to die at home, palliative care provided by General Practitioners (GPs) may increase the chance of dying at home, however, there is a lack of knowledge on how GPs should provide palliative care. We aimed to identify roles, tasks and approaches of GPs enabling palliative care, by exploring the experiences of GPs, other healthcare professionals, patients, and relatives through a systematic review of the qualitative literature. METHODS: We searched PubMed, EMBASE, PsycINFO, Web of Science, and CINAHL in March 2022. Thematic analysis was used for synthesizing the results. RESULTS: Four thousand five hundred sixty three unique records were retrieved, and 12 studies were included for review. Of these, ten were interview or focus group studies and two were survey studies with additional open-ended questions. Only qualitative findings from the studies were used in synthesizing the results. Thematic analysis produced four main themes describing the roles, tasks and approaches of GPs enabling palliative care to increase the chance for patients to die at home. GPs can support patients in the final phases of life by applying a holistic, patient-centred, and proactive approach to palliative care and by having sufficient education and training. Furthermore, the palliative care consultation should include symptom management, handling psychosocial and spiritual needs, maintaining a fragile balance, and proper communication with the patient. Lastly, GPs must address several palliative care elements surrounding the consultation including initiating the palliative care, being available, being the team coordinator/collaborator, providing continuous care and having sufficient knowledge about the patient. CONCLUSIONS: The roles, tasks and approaches of the GPs enabling palliative care include being aware of elements in the palliative care consultation and elements surrounding the consultation and by having sufficient education and training and a broad, proactive, and patient-centred approach.
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Clínicos Gerais , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Idoso , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Assistência Terminal/psicologia , Clínicos Gerais/psicologia , Atitude do Pessoal de SaúdeRESUMO
OBJECTIVES: To assess the effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on symptom burden, to explore intervention mechanisms through patient and intervention provider characteristics and to assess long-term survival and place of death. MEASURES: The effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on patient symptom burden was studied in the Domus randomised clinical trial. Participants had incurable cancer and limited treatment options. The intervention was provided by specialised palliative home teams (SPT) based in hospice or hospital and was enriched with a psychological intervention for patient and caregiver dyad. Symptom burden was measured with Edmonton Symptom Assessment System (ESAS-r) at baseline, 8 weeks and 6 months follow-up and analysed with mixed models. Survival and place of death was analysed with Kaplan-Meier and Fisher's exact tests. RESULTS: The study included 322 patients. Tiredness was significantly improved for the Domus intervention group at 6 months while the other nine symptom outcomes were not significantly different from the control group. Exploring the efficacy of intervention provider demonstrated significant differences in favour of the hospice SPT on four symptoms and total symptom score. Patients with children responded more favourably to the intervention. The long-term follow-up demonstrated no differences between the intervention and the control groups regarding survival or home deaths. CONCLUSIONS: The Domus intervention may reduce tiredness. Moreover, the intervention provider and having children might play a role concerning intervention efficacy. The intervention did not affect survival or home deaths. TRIAL REGISTRATION NUMBER: NCT01885637.
Assuntos
Serviços de Assistência Domiciliar , Oncologia/métodos , Neoplasias/terapia , Cuidados Paliativos/métodos , Transferência de Pacientes/métodos , Adulto , Cuidadores/psicologia , Criança , Fadiga/etiologia , Fadiga/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de SaúdeRESUMO
BACKGROUND: A small proportion of patients account for the majority of health care costs. This group is often referred to as high-cost users (HCU). A frequently described characteristic of HCU is chronic disease. Yet, there is a gap in understanding the economic burden of chronic diseases associated with HCU to different types of health care services. OBJECTIVE: To analyze which frequent chronic diseases have the strongest association with HCU overall, and HCU in hospital, primary care, and prescription medication. DESIGN: This is a register-based observational study on Danish health service costs for various diseases in different medical settings. PARTICIPANTS: A total of 1,350,677 individuals aged ≥ 18 years living in the Capital Region of Denmark by 1 January 2012 were included. MAIN MEASURES: Chronic diseases, costs, and sociodemographic data were extracted from the nationwide registers, including data from hospitals, primary care, and medicine consumption. These information were merged on an individual level. KEY RESULTS: Cancer, mental disorders except depression, and heart diseases have the strongest association with HCU overall. Mental disorders except depression were in the three diseases most prevalent in HCU in all the three health care services. CONCLUSIONS: Our results show that the chronic diseases that have the strongest association with HCU differ between different types of health care services. Our findings may be helpful in informing future policies about health care organization and may guide to different prevention, treatment, and rehabilitation strategies that could lessen the burden in the hospital.
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Doença Crônica/economia , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica/epidemiologia , Estudos Transversais , Dinamarca/epidemiologia , Feminino , Hospitalização/economia , Humanos , Masculino , Pessoa de Meia-Idade , Multimorbidade , Medicamentos sob Prescrição/economia , Atenção Primária à Saúde/economia , Sistema de Registros , Adulto JovemAssuntos
Serviços de Assistência Domiciliar/normas , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Enfermagem Oncológica/normas , Cuidados Paliativos/normas , Guias de Prática Clínica como Assunto , Cuidado Transicional/normas , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de VidaRESUMO
BACKGROUND: The use of chemotherapy in the last 14 days of life should be as low as possible. AIM: To study the factors related to the use of chemotherapy in the last 14 days of life and the factors related to concurrent antineoplastic treatment and specialized palliative care. DESIGN: This was a population-based cohort study. The data were collected from the Danish Register of Causes of Death, the Danish National Patient Register, and the Danish Palliative Care Database. Analyses were descriptive and multivariate logistic regression. SETTING/PARTICIPANTS: Cancer decedents between 2010 and 2013 in the Capital Region of Denmark. RESULTS: During the study period, 17,246 individuals died of cancer and 33% received specialized palliative care. In the last 14 days of life, 4.2% received chemotherapy. Younger patients and patients with hematological cancers were more likely to receive chemotherapy in the last 14 days of life. Receiving specialized palliative care was associated with a lower risk of receiving chemotherapy in the last 14 days of life-odds ratio 0.15 for hospices and 0.53 for palliative hospital units. A total of 8% of the population received concurrent antineoplastic treatment and specialized palliative care. Female gender, younger age, and breast and prostate cancer were significantly associated with this concurrent model. CONCLUSION: Overall, the incidence of antineoplastic treatment in the last 14 days of life was low compared to other studies. Patients in specialized palliative care had a reduced risk of receiving chemotherapy at the end of life.
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Antineoplásicos/uso terapêutico , Cuidados Paliativos , Especialização , Assistência Terminal , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Dinamarca , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Sistema de RegistrosRESUMO
ABSTRACTObjective:Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient-caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. METHOD: The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions. RESULTS: Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members. SIGNIFICANCE OF RESULTS: Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC.
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Cuidadores/psicologia , Serviços de Assistência Domiciliar/tendências , Pacientes/psicologia , Estresse Psicológico/terapia , Protocolos Clínicos/normas , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Estresse Psicológico/psicologiaRESUMO
CONTEXT: Avoidable hospital admissions are important negative indicators of quality of end-of-life care. Specialized palliative care (SPC) may support patients remaining at home. OBJECTIVES: Therefore, the purpose of this study was to investigate if SPC at home could prevent hospital admissions in patients with incurable cancer. METHODS: These are secondary results of Domus: a randomized controlled trial of accelerated transition to SPC with psychological intervention at home (Clinicaltrials.gov: NCT01885637). Participants were patients with incurable cancer and limited antineoplastic treatment options and their caregivers. They were included from the Department of Oncology, Rigshospitalet, Denmark, between 2013 and 2016. The control group received usual care. Outcomes were hospital admissions, causes thereof, and patient and caregiver perceptions of place of care (home, hospital, etc.) at baseline, four weeks, eight weeks, and six months. RESULTS: During the study, 340 patients were randomized and 322 were included in modified intention-to-treat analyses. Overall, there were no significant differences in hospital admissions between the groups. The intervention group had more admissions triggered by worsened general health (22% vs. 16%, P = 0.0436) or unmanageable home situation (8% vs. 4%, P = 0.0119). After diagnostics, admissions were more often caused by clinical symptoms of cancer without progression in the intervention group (11% vs. 7%, P = 0.0493). The two groups did not differ significantly in overall potentially avoidable admissions. Both groups felt mostly safe about their place of care. CONCLUSION: The intervention did not prevent hospital admissions. Likely, any intervention effects were outweighed by increased identification of problems in the intervention group leading to hospital admissions. Overall, patients and caregivers felt safe in their current place of care.
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Serviços de Assistência Domiciliar , Hospitalização , Neoplasias/terapia , Cuidados Paliativos , Assistência Terminal , Idoso , Cuidadores , Feminino , Humanos , Masculino , Neoplasias/psicologia , Assistência Terminal/métodosRESUMO
PURPOSE: Studies with neuropsychological assessments in patients with cancer are sparse, and the evidence is very limited regarding their status of cognitive function over time. This study aimed at assessing the prevalence and predictors of cognitive impairment in patients with cancer in palliative care. METHODS: Prospective longitudinal investigation derived from the European Palliative Care Cancer Symptom study (2011-2013) including patients with cancer in palliative care, ≥18 years, and with at least one assessment post-inclusion. For cognitive assessment, a 4-item version of the Mini Mental State Examination was applied at inclusion and after 4 to 16 weeks. Logistic regression model with multiple imputations was applied. RESULTS: The sample consisted of 1568 patients (50% male, mean age 65.5, 42% with 10-12 years schooling, mean Karnofsky Performance Status-KPS 68%). Longitudinal analysis of the patients with complete MMSE at both assessments (n = 801) showed that 64.5% were not impaired, 12.5% remained cognitively impaired, 11.4% developed impairment, and 11.6% improved. Those who improved cognitively also reported reduced pain intensity and increased appetite. The predictive model (n = 1351) showed that those with low KPS (OR = 1.6, 95% CI 1.0-2.5) most often developed cognitive impairment, while patients with breast cancer (OR = 0.4, 95% CI 0.2-0.7) had lower odds for impairment. CONCLUSIONS: During palliative care, a substantial number of patients remained cognitively impaired or developed cognitive impairment; however, it is noteworthy that improvement was also observed. Physical performance and cancer type may predict cognitive impairment.
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Disfunção Cognitiva/diagnóstico , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Idoso , Cognição , Feminino , Humanos , Avaliação de Estado de Karnofsky , Modelos Logísticos , Estudos Longitudinais , Masculino , Testes Neuropsicológicos , Cuidados Paliativos/psicologia , Valor Preditivo dos Testes , Prevalência , Estudos ProspectivosRESUMO
PURPOSE: The purposes of the present study were to classify the palliative care population (PCP) in a comprehensive cancer centre by using information on antineoplastic treatment options and to analyse associations between socio-demographic factors, cancer diagnoses, treatment characteristics and receiving specialist palliative care (SPC). METHODS: This is a cross-sectional screening study of patients with cancer in the Department of Oncology, Rigshospitalet, Copenhagen University Hospital for 6 months. Patients were assessed to be included in the DOMUS study: a randomised controlled trial of accelerated transition to SPC at home (NCT01885637). The PCP was classified as patients with incurable cancer and limited or no antineoplastic treatment options. Patients with performance status 2-4 were further classified as the essential palliative care population (EPCP). RESULTS: During the study period, 3717 patients with cancer were assessed. The PCP comprised 513 patients yielding a prevalence of 14 %. The EPCP comprised 256 patients (7 %). The EPCP was older, more likely inpatients, had a higher comorbidity burden and 38 % received SPC. Women, patients without caregivers and patients with breast cancer were more likely to receive SPC. CONCLUSIONS: By using objective criteria from clinical data and systematic screening, the observed prevalence of the PCP of 14 % may be generalisable to comprehensive cancer centres with similar composition of cancer diagnoses.
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Institutos de Câncer/estatística & dados numéricos , Estudos Transversais/métodos , Cuidados Paliativos/classificação , Idoso , Cuidadores , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-IdadeRESUMO
BACKGROUND: The focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death. The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention. METHODS/DESIGN: DOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options. DISCUSSION: Programs that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients' quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient's preferred place of care and attempt to clarify challenges. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT01885637.