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1.
BMC Palliat Care ; 18(1): 111, 2019 Dec 09.
Artigo em Inglês | MEDLINE | ID: mdl-31818281

RESUMO

BACKGROUND: Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients' death in French palliative care units and their needs for support. METHODS: This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient' death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients' death based on an Hospital Anxiety and Depression score (range 0-42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient' death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient's death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. DISCUSSION: This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives' experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs. TRIAL REGISTRATION: NCT03748225 registered on 11/19/2018. Recruiting patients.


Assuntos
Família/psicologia , Pesar , Cuidados Paliativos/psicologia , Protocolos Clínicos , França , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Estudos Prospectivos , Inquéritos e Questionários
2.
Sci Rep ; 9(1): 18689, 2019 12 10.
Artigo em Inglês | MEDLINE | ID: mdl-31822734

RESUMO

To compare the incidence of brain metastases of advanced non-small cell lung cancer (NSCLC) treated with systemic cytotoxic chemotherapy (CC) and targeted therapy (TT), we performed a large-scale, retrospective, nationwide, cohort study. The population data were extracted from the Health Insurance Review and Assessment Service of Korea database from January 1, 2011, to November 30, 2016. Of the 29,174 patients newly diagnosed with stage IIIB or IV NSCLC who received systemic treatment, we investigated the initial and subsequent incidence of brain metastases. Besides, among 22,458 patients without initial brain metastasis, the overall cumulative incidence of subsequent brain metastases was compared according to systemic treatment administered. In total, 1,126 (5.0%) patients subsequently developed brain metastasis. The overall cumulative incidence of brain metastasis was significantly higher in the TT group than in the CC group (1-year cumulative incidence: 8.7% vs. 3.8%; 3-year: 17.2% vs. 5.0%; P < 0.001). Younger age, female sex, and first-line TT were significant risk factors for subsequent brain metastasis. In conclusion, the overall cumulative incidence of brain metastasis was significantly higher in patients received TT as the first-line treatment than in those received CC.


Assuntos
Neoplasias Encefálicas/secundário , Neoplasias Encefálicas/terapia , Carcinoma Pulmonar de Células não Pequenas/patologia , Carcinoma Pulmonar de Células não Pequenas/terapia , Neoplasias Pulmonares/patologia , Neoplasias Pulmonares/terapia , Idoso , Antineoplásicos/uso terapêutico , Terapia Combinada , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Metástase Neoplásica , Cuidados Paliativos , República da Coreia/epidemiologia , Estudos Retrospectivos , Fatores de Risco , Resultado do Tratamento
3.
BMC Palliat Care ; 18(1): 118, 2019 Dec 27.
Artigo em Inglês | MEDLINE | ID: mdl-31881958

RESUMO

BACKGROUND: Early identification of palliative patients is challenging. The Surprise Question (SQ1; Would I be surprised if this patient were to die within 12 months?) is widely used to identify palliative patients. However, its predictive value is low. Therefore, we added a second question (SQ2) to SQ1: 'Would I be surprised if this patient is still alive after 12 months?' We studied the accuracy of this double surprise question (DSQ) in a general practice. METHODS: We performed a prospective cohort study with retrospective medical record review in a general practice in the eastern part of the Netherlands. Two general practitioners (GPs) answered both questions for all 292 patients aged ≥75 years (mean age 84 years). Primary outcome was 1-year death, secondary outcomes were aspects of palliative care. RESULTS: SQ1 was answered with 'no' for 161/292 patients. Of these, SQ2 was answered with 'yes' in 22 patients. Within 12 months 26 patients died, of whom 24 had been identified with SQ1 (sensitivity: 92%, specificity: 49%). Ten of them were also identified with SQ2 (sensitivity: 42%, specificity: 91%). The latter group had more contacts with their GP and more palliative care aspects were discussed. CONCLUSIONS: The DSQ appears a feasible and easy applicable screening tool in general practice. It is highly effective in predicting patients in high need for palliative care and using it helps to discriminate between patients with different life expectancies and palliative care needs. Further research is necessary to confirm the findings of this study.


Assuntos
Programas de Rastreamento/métodos , Cuidados Paliativos/psicologia , Prognóstico , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino , Países Baixos , Cuidados Paliativos/métodos , Estudos Prospectivos , Inquéritos e Questionários , Revelação da Verdade
4.
Presse Med ; 48(11 Pt 1): e293-e306, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31734050

RESUMO

BACKGROUND: Little is known regarding healthcare for cancer patients treated mainly at home during the month before they die. The aim of this study was to provide information on how they were treated and what were their causes of death. METHODS: This population-based observational study analysing information obtained from the French national healthcare data system (SNDS) included adult health insurance beneficiaries treated for cancer who died in 2015 after having spent at least 25 of their last 30 days at home. RESULTS: Among the cancer patients who died in 2015, 25,463 (20%) were included [mean age (±SD) 74±13.2 years, men 62%]; 54% of them died at home. They were slightly older (75 vs. 73 years) than those who died in hospital, had less frequently received hospital palliative care during the year preceding their deaths (19% vs. 41%) and had less often used medical transport (41% vs. 73%) to an emergency department (8% vs. 62%), to hospital-based (11% vs. 17%) or community-based (16% vs. 12%) chemotherapy, to a general practitioner (73% vs. 78%) or to a community-based nursing service (63% vs. 73%). However, when they consulted a general practitioner (median 3 visits vs. 2) or a nurse (median 22 nursing procedures vs. 10) during their last month of life, visits were more frequent. The leading cause of death was tumour, which represented 69% of deaths at home vs. 74% of deaths in hospital. CONCLUSIONS: In France, home management during the last month of life is uncommon and even when it is occurs, in one out of two cases patients pass away in a hospital setting. This study is an interrogation on medical choices, given the wish of many of the French to die at home and placing their choices in an international perspective.


Assuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Assistência Domiciliar , Neoplasias/mortalidade , Neoplasias/terapia , Assistência Terminal , Distribuição por Idade , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Comorbidade , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , França , Medicina Geral/estatística & dados numéricos , Assistência Domiciliar/estatística & dados numéricos , Mortalidade Hospitalar , Humanos , Masculino , Pessoa de Meia-Idade , Serviços de Enfermagem/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Estudos Retrospectivos , Distribuição por Sexo , Fatores de Tempo , Transporte de Pacientes/estatística & dados numéricos
5.
Langenbecks Arch Surg ; 404(7): 831-840, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31748872

RESUMO

PURPOSE: Total pancreatectomy may improve symptoms in patients with severe end-stage chronic pancreatitis. This might be achieved whilst preserving both the duodenum- and spleen-(DPSPTP). Mature clinical outcomes of this approach are presented. METHODS: Single-centre prospective cohort study performed between September 1996 and May 2016. Demographic, clinical details, pain scores and employment status were prospectively recorded during clinic attendance. RESULTS: Fifty-one patients (33 men, 18 women) with a median (interquartile range) age of 40.8 (35.3-49.4) years, a median weight of 69.8 (61.0-81.5) Kg and a median body mass index of 23.8 (21.5-27.8), underwent intended duodenum-and spleen-preserving near-total pancreatectomy for end-stage chronic pancreatitis. Aetiology was excess alcohol in 25, idiopathic (no mutation) in 15, idiopathic (SPINK-1/CFTR mutations) in two, hereditary (PRSS1 mutation) in seven and one each post-necrotising pancreatitis and obstructive pancreatic duct divisum in 1. The main indication for surgery was severe pain. Findings included parenchymal calcification in 79% and ductal calculi in 24%, a dilated main pancreatic duct in 57% and a dilated main bile duct in 17%, major vascular involvement in 27% and pancreato-peritoneal fistula in 2%. Postoperative complications occurred in 20 patients with two deaths. Median pain scores were 8 (7-8) preoperatively and 3 (0.25-5.75) at 5 years (p = 0.013). Opiate analgesic use was significantly reduced postoperatively (p = 0.048). Following surgery, 22 (63%) of 38 patients of working age re-entered employment compared with 12 (33%) working preoperatively (p = 0.016). CONCLUSION: Duodenum-and spleen-preserving near-total pancreatectomy provided long-term relief in adult patients with intractable chronic pancreatitis pain, with improved employment prospects.


Assuntos
Duodeno/cirurgia , Cuidados Paliativos/métodos , Pancreatectomia/métodos , Pancreatite Crônica/cirurgia , Baço/cirurgia , Adulto , Estudos de Coortes , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Pancreatite Crônica/diagnóstico , Estudos Prospectivos , Resultado do Tratamento
6.
Radiat Oncol ; 14(1): 202, 2019 Nov 12.
Artigo em Inglês | MEDLINE | ID: mdl-31718670

RESUMO

BACKGROUND: The objective of this investigation is to evaluate the outcomes and toxicity of carbon-ion re-irradiation (CIR) in patients with rare head and neck cancers (HNC). There is a paucity of data regarding treatment approaches in this patient cohort, which we aim to address in this work. METHODS: Thirty-two (n = 32) consecutive patients with uncommon HNC treated between 2010 and 2017 were retrospectively analyzed in terms of clinical outcomes, patterns of failure, and toxicity. RESULTS: Mucoepidermoid carcinoma (MEC) was the most common histology (22%). Patients received a median cumulative dose equivalent in 2 Gy fractions (EQD2) after CIR of 128.6 Gy (range, 105.8-146.5 Gy). The local and distant control rates 1 year after CIR were 66 and 72%. No serious acute or late toxicity (≥ grade 3) after CIR was observed. CONCLUSIONS: CIR may represent an effective and safe treatment alternative to palliative systemic therapies in these rare indications.


Assuntos
Neoplasias de Cabeça e Pescoço/radioterapia , Radioterapia com Íons Pesados/métodos , Terapia de Salvação/métodos , Idoso , Carcinoma Mucoepidermoide/radioterapia , Intervalo Livre de Doença , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Metástase Neoplásica , Recidiva Local de Neoplasia , Cuidados Paliativos/métodos , Prognóstico , Doenças Raras/radioterapia , Reirradiação/efeitos adversos , Estudos Retrospectivos , Resultado do Tratamento
7.
Acta Oncol ; 58(12): 1699-1705, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31742490

RESUMO

Background: To avoid aggressive treatments at the end-of-life and to provide palliative care (PC), physicians need to terminate futile anti-cancer treatments and define the palliative goal of the treatment in time. This single center study assesses the practices used to make the decision that leads to treatment with a palliative goal, i.e., the PC decision and its effect on anti-cancer treatments at the end of life.Material and methods: Patients with a cancer diagnosis treated in tertiary hospital during 1st January 2013 - 31st December 2014 and deceased by the end of 2014 were identified in the hospital database (N = 2737). Of these patients, 992 were randomly selected for this study. The PC decision was screened from patient records, i.e., termination of cancer-specific treatments and a focus on symptom-centered PC.Results: The PC decision was defined in 82% of the patients during the last year of life (49% >30 days and 33% ≤30 days before death, 18% with no decision). The median time from the decision to death was 46 days. Systemic cancer therapy was given during the last month of life in 1%, 36% and 38% (p < .001) and radiotherapy 22%, 40% and 31% (p = .03) cases, respectively; referral to a PC unit was made in 62%, 22% and 11%, respectively (p < .001). In logistic regression analyses younger age, shorter duration of the disease trajectory and type of cancer (e.g., breast cancer) were associated with a lack or late timing of the PC decision.Conclusion: The decision to initiate a palliative goal for the treatment was frequently made for cancer patients but occurred late for every third patient. Younger age and certain cancer types were associated with late PC decisions, thus leading to anti-cancer treatments continuing until close to the death with low access to a PC unit.


Assuntos
Tomada de Decisão Clínica , Neoplasias/terapia , Cuidados Paliativos , Assistência Terminal , Fatores Etários , Idoso , Análise de Variância , Estudos de Coortes , Feminino , Finlândia , Humanos , Masculino , Neoplasias/mortalidade , Centros de Atenção Terciária , Fatores de Tempo
8.
BMC Palliat Care ; 18(1): 101, 2019 Nov 13.
Artigo em Inglês | MEDLINE | ID: mdl-31722691

RESUMO

BACKGROUND: Timely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa. METHODS: Patients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records. RESULTS: 822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68-81%), specificity of 85% (83-88%), a positive predictive value of 56% (49-63%) and a negative predictive value of 93% (91-95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87-16.9, p < 0.001). CONCLUSIONS: The identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.


Assuntos
Doenças Transmissíveis/epidemiologia , Doenças não Transmissíveis/epidemiologia , Cuidados Paliativos/organização & administração , Síndrome Coronariana Aguda/epidemiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Doenças Transmissíveis/mortalidade , Feminino , Infecções por HIV/epidemiologia , Hospitais Públicos , Humanos , Estimativa de Kaplan-Meier , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Prognóstico , Estudos Prospectivos , Sensibilidade e Especificidade , Fatores Socioeconômicos , África do Sul/epidemiologia , Acidente Vascular Cerebral/epidemiologia , Tuberculose/epidemiologia
9.
Zhonghua Wei Chang Wai Ke Za Zhi ; 22(11): 1051-1057, 2019 Nov 25.
Artigo em Chinês | MEDLINE | ID: mdl-31770836

RESUMO

Objective: To explore the short-term efficacy and prognosis of palliative surgical treatment for malignant bowel obstruction (MBO) caused by peritoneal metastasis of colorectal cancer (mCRC). Methods: A retrospective cohort study was conducted. The inclusion criteria for patients were as follows: (1) primary colorectal cancer; (2) massive peritoneal metastasis; (3)obstructive site located below Treitz ligament by imaging; (4) obstruction refractory to conservative treatment; (5) estimated rese survival time more than 2 months; (6) patients and their families had strong willingness for operation; (7) surgical treatment included stoma/bypass and debulking surgery. In accordance with the above criteria, clinicopathological data of 46 patients undergoing palliative surgery at Peking University Gastrointestinal Cancer Center, Unit III from January 2016 to October 2018 were retrospectively collected. Postoperative symptomatic relief rate, morbidity of complication within 30 days, complication classification (Clavien-Dindo classification), mortality and survival after operation were analyzed. Kaplan-Meier method was used to evaluate survival and Cox regression analysis was used to identify prognostic factors. Results: Among 46 patients, 30 were male and 16 were female with median age of 63 (19-87) years; 23 patients received stoma/bypass surgery (stoma/bypass group), and 23 cases received tumor debulking surgery (debulking group). The overall symptom relief rate was 76.1% (35/46), while symptom relief rate in the debulking group was 91.3% (21/23), which was significantly higher than 60.9% (14/23) in the stoma/bypass group (χ(2)=4.301, P=0.038). Postoperative complications occurred in 25 patients. The complication rate was 52.2% (12/23) in the debulking group and 56.5% (13/23) in the stoma/bypass group, without statistically significant difference (χ(2)=0.088, P=0.767). Morbidity of complication beyond grade III was 8.7% (2/23) and 13.0% (3/23) in the debulking group and stoma/bypass group respectively, without statistically significant difference (χ(2)=0.224, P=0.636). Four patients died within 30 days after operation, 2 (8.7%) in each group. Twenty-four patients underwent 1-8 cycles of chemotherapy ± targeting therapy (regimens: CapeOX ± Bevacizumab, FOLFOX/FOLFIRI ± Bevacizumab/Cetuximab), including 10 cases in the stoma/bypass group and 14 cases in the debulking group. Two patients of debulking group received postoperative radiotherapy and chemotherapy (50.6 Gy/22 f, with concurrent oral capecitabine). Till the last follow up of April 2019, 34 patients died (34/46, 73.9%) with a median overall survival time of 6.4 months, and the 6-month and 1-year survival rate was 54.5% and 29.2% respectively. The median survival time in the debulking group was significantly longer than that in the stoma/bypass group (11.5 months vs. 5.2 months, χ(2)=5.117, P=0.024). The median survival time of the 35 patients with symptomatic relief after operation was significant longer than that of 11 patients without relief (7.1 months vs 5.1 months, χ(2)=3.844, P=0.050). Multivariate analysis showed stoma/bypass surgery (HR=2.917, 95%CI:1.357-6.269, P=0.006) and greater omental metastasis (HR=4.060, 95%CI:1.419-11.617, P=0.009) were independent risk factors associated with prognosis of patients with MBO caused by peritoneal mCRC. Conclusions: For patients of MBO caused by peritoneal mCRC, tumor debulking surgery may achieve higher symptom relief rate and prolong survival. Greater omental metastasis indicates poor prognosis.


Assuntos
Neoplasias Colorretais/patologia , Obstrução Intestinal/cirurgia , Cuidados Paliativos , Neoplasias Peritoneais/secundário , Neoplasias Peritoneais/cirurgia , Adulto , Idoso , Idoso de 80 Anos ou mais , Procedimentos Cirúrgicos de Citorredução , Feminino , Humanos , Obstrução Intestinal/etiologia , Masculino , Pessoa de Meia-Idade , Omento , Neoplasias Peritoneais/complicações , Neoplasias Peritoneais/tratamento farmacológico , Prognóstico , Estudos Retrospectivos , Resultado do Tratamento , Adulto Jovem
10.
Nephrol Ther ; 15(7): 498-505, 2019 Dec.
Artigo em Francês | MEDLINE | ID: mdl-31727511

RESUMO

For more than 10 years, nephrologists in the Grenoble-region have sought advice from the Ethical Concertation Unit in Nephrology with regards to whether to stop or continue dialysis for patients under palliative care. This process deserves a multidisciplinary debate between health professionals and qualified non-health professionals. Thus, we organized a qualitative research protocol in three parts (medical, philosophical, judicial) to explore this issue. Our study aimed to assess the impact of Ethical Concertation Unit in Nephrology's discussions regarding perception, knowledge, and judicial and ethical considerations. The practical repercussions of decision-making within medical practice, its impacts on the patient and his/her family, as well as associated-health professionals, was assessed. To achieve this, two questionnaires and an interview were organized by three Ethical Concertation Unit in Nephrology-leaders to review the viewpoints of the 22 permanent Ethical Concertation Unit in Nephrology members that had participated in 10 Ethical Concertation Unit in Nephrology sessions between 2015 and 2016 to discuss 21 case-reports. Only 13 persons (4 physicians, 6 nurses, 3 non-health professionals) agreed to respond to the questionnaires, and six physicians agreed to participate in an interview. Overall, it was found that most affected patients' physicians agreed with the multidisciplinary discussion, which included judicial and ethical perspectives, and felt reassured with regards to Ethical Concertation Unit in Nephrology's final decision. However, our study showed that Ethical Concertation Unit in Nephrology's functioning could be improved by promoting its existence more widely, by making these decisions earlier within clinical situations, to make Ethical Concertation Unit in Nephrology more accessible to health workers, to make reports easier to understand, to re-examine a posteriori some clinical situations, and to broaden the scope of multidisciplinary skills.


Assuntos
Protocolos Clínicos , Comissão de Ética , Nefrologia/organização & administração , Cuidados Paliativos/ética , Pesquisa Qualitativa , Diálise Renal/ética , Suspensão de Tratamento/ética , Tomada de Decisões/ética , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Comunicação Interdisciplinar , Entrevistas como Assunto , Enfermeiras e Enfermeiros/psicologia , Cuidados Paliativos/legislação & jurisprudência , Filosofia Médica , Médicos/psicologia , Inquéritos e Questionários , Suspensão de Tratamento/legislação & jurisprudência
11.
J Hosp Palliat Nurs ; 21(6): 475-481, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31568110

RESUMO

Heart failure affects 6.5 million Americans, with 1 million hospitalizations annually, a 22% readmission rate, and $31 billion in health care costs. Palliative care decreases symptom burden, readmissions, and costs. Many elderly patients have difficulty recognizing and reporting heart failure symptoms to their providers in a timely manner. Self-management tools with color-coded zones (green = "all clear," yellow = "caution," red = "take action") help patients recognize and respond to heart failure symptoms and reduce readmissions. The purpose of this quality improvement project was to develop, implement, and evaluate a low-literacy zone tool for heart failure self-management with home-based palliative care patients. An interdisciplinary palliative care team developed this zone tool. Health literacy was prescreened with the Newest Vital Sign instrument. Nurses provided the zone tool to patients and caregivers and instructed them in use of this tool for daily self-monitoring. In postimplementation surveys, participants rated the zone tool as easy to understand and helpful in recognizing and reporting symptoms. This project demonstrated feasibility of a new zone tool for heart failure self-management, resulting in a practice change for this home-based palliative care program. The interdisciplinary team eventually developed similar zone tools for cancer, cirrhosis, chronic obstructive pulmonary disease, dementia, and frailty self-management.


Assuntos
Insuficiência Cardíaca/terapia , Alfabetização/normas , Autogestão/métodos , Idoso , Idoso de 80 Anos ou mais , California , Feminino , Insuficiência Cardíaca/complicações , Insuficiência Cardíaca/psicologia , Humanos , Alfabetização/psicologia , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/tendências , Projetos Piloto , Melhoria de Qualidade , Inquéritos e Questionários
12.
BMC Palliat Care ; 18(1): 83, 2019 Oct 21.
Artigo em Inglês | MEDLINE | ID: mdl-31638968

RESUMO

BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus. METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.


Assuntos
Inquéritos e Questionários/normas , Migrantes/estatística & dados numéricos , Adulto , Técnica Delfos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Pesquisadores , Autoavaliação (Psicologia) , Inquéritos e Questionários/estatística & dados numéricos , Populações Vulneráveis/estatística & dados numéricos
13.
Rev. méd. Chile ; 147(10): 1239-1246, oct. 2019. tab, graf
Artigo em Inglês | LILACS | ID: biblio-1058590

RESUMO

ABSTRACT Background: Immunoglobulin light chain (AL) amyloidosis is a rare and underdiagnosed entity. Aim: To characterize patients with AL amyloidosis in Chilean public health centers. Material and Methods: We conducted a retrospective, multicenter study. Public centers of the Chilean Monoclonal Gammopathies Cooperative Group were asked to search for patients with AL amyloidosis in their databases. Epidemiological, clinical and laboratory characteristics were evaluated. Results: Forty-two patients aged 22 to 84 years were found. Twenty four percent had localized AL amyloidosis; 64% had a lambda light chain clone; 47% were associated with multiple myeloma and 9% with non-Hodgkin lymphoma. The most commonly involved organ was the kidney (76%). Serum free light chains were measured in 31% and an echocardiogram was performed in 74% of patients. Seventeen percent of patients received only palliative care, 17% were treated with bortezomib, 21% with thalidomide, and 40% with melphalan. No patient was transplanted. The mean overall survival (OS) of the group was 19 months. The 5-year OS was 28%. Conclusions: It is important to obtain these realistic, national data to initiate strategies to improve early diagnosis and proper management of this disease.


La amiloidosis AL es una entidad poco frecuente y subdiagnosticada. Mientras todo el mundo discute sobre las nuevas herramientas diagnósticas y terapéuticas, en Chile y en América Latina en general, estamos lejos de esa realidad. El objetivo del presente estudio fue caracterizar a los pacientes con amiloidosis AL en centros del sistema público de nuestro país. Se realizó un estudio retrospectivo, multicéntrico, descriptivo. Los centros públicos del grupo cooperativo hematológico chileno buscaron en sus bases de datos pacientes diagnosticados con amiloidosis AL. Se evaluaron las características epidemiológicas, clínicas y de laboratorio. La edad media fue de 65 años. A 24% de los pacientes se les diagnosticó amiloidosis AL localizada; 64% tuvo paraproteína con cadena ligera lambda; 47% se asoció con mieloma múltiple y 9% con linfoma no Hodgkin. El órgano afectado con mayor frecuencia fue el riñón (76%). Las cadenas ligeras libres de suero se realizaron en 31% y ecocardiograma en 74%. El 17% recibió solo cuidados paliativos, 17% recibió tratamiento con bortezomib, 21% con talidomida y 40% con melfalán. Ningún paciente fue trasplantado. La media de sobrevida global (SG) del grupo fue de 19 meses. La SG a 5 años fue de 28%. Es importante reportar estos resultados nacionales para iniciar estrategias que mejoren tanto el diagnóstico temprano como el tratamiento de esta patología. Por lo tanto, mejorar la sospecha diagnóstica es crucial.


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Adulto Jovem , Setor Público/estatística & dados numéricos , Amiloidose de Cadeia Leve de Imunoglobulina/epidemiologia , Serviços de Saúde/estatística & dados numéricos , Fatores de Tempo , Eletroforese das Proteínas Sanguíneas , Chile/epidemiologia , Estudos Retrospectivos , Cadeias lambda de Imunoglobulina , Estimativa de Kaplan-Meier , Amiloidose de Cadeia Leve de Imunoglobulina/fisiopatologia
14.
Curr Oncol ; 26(4): 247-252, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31548804

RESUMO

Background: End-of-life cancer care involves multidisciplinary teams working in various settings. Evaluating the quality of care and the feedback from such processes is an important aspect of health care quality improvement. Our retrospective cohort study reviewed health care use by lung cancer patients at end of life, their reasons for visiting the emergency department (ed), and feedback from regional health care professionals. Methods: We assessed 162 Ontario patients with small-cell and relapsed or advanced non-small-cell lung cancer. Demographics, disease characteristics, and resource use were collected, and the consenting caregivers for patients with ed visits were interviewed. Study results were disseminated, and feedback about barriers to care was sought. Results: Median patient age was 69 years; 73% of the group had non-small-cell lung cancer; and 39% and 69% had received chemotherapy and radiation therapy respectively. Median overall survival was 5.6 months. In the last 3 months of life, 93% of the study patients had visited an oncologist, 67% had telephoned their oncology team, 86% had received homecare, and 73% had visited the ed. Death occurred for 55% of the patients in hospital; 23%, at home; and 22%, in hospice. Goals of care had been documented for 68% of the patients. Homecare for longer than 3 months was associated with fewer ed visits (80.3% vs. 62.1%, p = 0.022). Key themes from stakeholders included the need for more resources and for effective communication between care teams. Conclusions: Use of acute-care services and rates of death in an acute-care facility are both high for lung cancer patients approaching end of life. In our study, interprofessional and patient-provider communication, earlier connection to homecare services, and improved access to community care were highlighted as having the potential to lower the need for acute-care resources.


Assuntos
Carcinoma Pulmonar de Células não Pequenas/terapia , Neoplasias Pulmonares/terapia , Carcinoma de Pequenas Células do Pulmão/terapia , Assistência Terminal/normas , Idoso , Idoso de 80 Anos ou mais , Serviço Hospitalar de Emergência , Feminino , Acesso aos Serviços de Saúde , Serviços de Assistência Domiciliar , Humanos , Masculino , Ontário , Cuidados Paliativos , Qualidade da Assistência à Saúde , Estudos Retrospectivos
15.
J Oncol Pract ; 15(12): e1066-e1075, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31550202

RESUMO

PURPOSE: Malignant bowel obstruction (MBO) is a common and distressing complication in women with advanced gynecologic cancer. A pilot, interprofessional MBO program was launched in 2016 at a large Canadian tertiary cancer center to integrate these patients' complex care needs across multiple disciplines and support women with MBO. METHOD: Retrospective analysis to evaluate the outcomes of women with advanced gynecologic cancer who were admitted to hospital because of MBO, before (2014 to 2016: baseline group) and after (2016 to 2018) implementation of the MBO program. RESULTS: Of the 169 women evaluated, 106 and 63 were in the baseline group and MBO program group, respectively. Most had ovarian cancer (n = 124; 73%) and had small-bowel obstruction (n = 131; 78%). There was a significantly shorter cumulative hospital length of stay (LOSsum) within the first 60 days of MBO diagnosis in the MBO program group compared with the baseline group (13 v 22 days, respectively; adjusted P = .006). The median overall survival for women treated in the MBO program was also significantly longer compared with the baseline group (243 v 99 days, respectively; adjusted P = .002). Using the interprofessional MBO care platform, a greater proportion of patients received palliative chemotherapy (83% v 56%) and less surgery (11% v 21%) in the MBO program group than in the baseline group, respectively. A subgroup of women (n = 11) received total parenteral nutrition for longer than 6 months. CONCLUSION: Implementation of a comprehensive, interprofessional MBO program significantly affects patient care and may improve outcomes. Unique to this MBO program is an integrated outpatient model of care and education that empowers patients to recognize MBO symptoms for early intervention.


Assuntos
Neoplasias dos Genitais Femininos/epidemiologia , Obstrução Intestinal/epidemiologia , Neoplasias Ovarianas/epidemiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Canadá/epidemiologia , Feminino , Neoplasias dos Genitais Femininos/economia , Neoplasias dos Genitais Femininos/patologia , Hospitalização , Humanos , Obstrução Intestinal/economia , Obstrução Intestinal/patologia , Obstrução Intestinal/cirurgia , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias Ovarianas/economia , Neoplasias Ovarianas/patologia , Cuidados Paliativos/economia
16.
J Pain Symptom Manage ; 58(6): 1033-1039.e1, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31472275

RESUMO

CONTEXT: Innovative patient-centered approaches to goals of care (GOC) communication training are needed. Teaching a narrative approach, centered on the patient's unique story, is conceptually sound but has not been evaluated with respect to objective skills attainment. We developed a curriculum based on a novel, easily-remembered narrative approach to GOC, the 3-Act Model, and piloted it with a cohort of internal medicine (IM) interns. OBJECTIVES: To describe the development of the 3-Act Model curriculum and to assess its impact on the GOC communication skills of IM interns. METHODS: The curriculum was developed with input from multidisciplinary experts, IM residents, and patient/family representative. Notable elements included instrument development with validity evidence established, determination of proficiency standards, and creation of role-play scenarios. In two three-hour workshops, interns participated in role-plays as both providers and patients, before and after teaching (which included narrative reflection, didactics, and video demonstration). RESULTS: 22 interns played the role of provider in five unique scenarios; 106 proficiency ratings were analyzable. Interns objectively rated as proficient increased from 30% (pretest) to 100% (final role-play). By the end of the training, 96% of interns strongly agreed or agreed that they felt ready to independently lead basic GOC discussions and the percentage who strongly agreed increased with successive role-plays. All interns indicated they would recommend the training. CONCLUSION: This pilot demonstrates that the 3-Act Model is teachable and appreciated by learners. This GOC curriculum is the first based on a narrative approach to demonstrate objective skills improvement.


Assuntos
Currículo , Cuidados Paliativos/organização & administração , Planejamento de Assistência ao Paciente , Adulto , Competência Clínica , Estudos de Coortes , Comunicação , Educação de Pós-Graduação em Medicina , Avaliação Educacional , Família , Feminino , Pessoal de Saúde , Humanos , Internato e Residência , Masculino , Narração , Assistência Centrada no Paciente/organização & administração , Pacientes
17.
Integr Cancer Ther ; 18: 1534735419878505, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31561722

RESUMO

Background: Pancreatic adenocarcinoma has a poor prognosis, resulting in a <10% survival rate at 5 years. Modulated electro-hyperthermia (mEHT) has been increasingly used for pancreatic cancer palliative care and therapy. Objective: To monitor the efficacy and safety of mEHT for the treatment of advanced pancreatic cancer. Methods: We collected data retrospectively on 106 patients affected by stage III-IV pancreatic adenocarcinoma. They were divided into 2 groups: patients who did not receive mEHT (no-mEHT) and patients who were treated with mEHT. We performed mEHT applying a power of 60 to 150 W for 40 to 90 minutes. The mEHT treatment was associated with chemotherapy and/or radiotherapy for 33 (84.6%) patients, whereas 6 (15.4%) patients received mEHT alone. The patients of the no-mEHT group received chemotherapy and/or radiotherapy in 55.2% of cases. Results: Median age of the sample was 65.3 years (range = 31-80 years). After 3 months of therapy, the mEHT group had partial response in 22/34 patients (64.7%), stable disease in 10/34 patients (29.4%), and progressive disease in 2/34 patients (8.3%). The no-mEHT group had partial response in 3/36 patients (8.3%), stable disease in 10/36 patients (27.8%), and progressive disease in 23/36 patients (34.3%). The median overall survival of the mEHT group was 18.0 months (range = 1.5-68.0 months) and 10.9 months (range = 0.4-55.4 months) for the non-mEHT group. Conclusions: mEHT may improve tumor response and survival of pancreatic cancer patients.


Assuntos
Cuidados Paliativos/métodos , Neoplasias Pancreáticas/terapia , Adenocarcinoma/terapia , Idoso , Feminino , Humanos , Hipertermia Induzida/métodos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Neoplasias Pancreáticas
18.
Sci Rep ; 9(1): 13685, 2019 09 23.
Artigo em Inglês | MEDLINE | ID: mdl-31548703

RESUMO

The life expectancy of unresectable hilar cholangiocellular carcinomas (CCCs) is very limited and endoscopic radiofrequency ablation (ERFA) of the biliary tract may prolong survival. Our single-center-study retrospectively analysed all CCC cases, in whom ERFAs of the biliary tract were performed between 2012 and 2017 and compared these to historical control cases who received the standard treatment of sole stent application. ERFA was performed in 32 patients with malignant biliary strictures that were mainly caused by Bismuth III and IV hilar CCCs (66%). 14 of these patients received repeated ERFAs, for an overall performance of 54 ERFAs. Stents were applied after examination of all patients (100%). Adverse events occurred in 18.5% of examinations. Case-control analysis revealed that the survival time of cases with unresectable Bismuth type III and IV hilar CCCs (n = 20) treated with combined ERFA and stent application significantly increased compared to controls (n = 22) treated with sole stent application (342 +/- 57 vs. 221 +/- 26 days; p = 0.046). In conclusion, ERFA therapy significantly prolonged survival in patients with unresectable Bismuth type III and IV hilar CCC. As an effective and safe method, ERFA should be considered as a palliative treatment for all these patients.


Assuntos
Neoplasias dos Ductos Biliares/terapia , Colangiocarcinoma/terapia , Idoso , Neoplasias dos Ductos Biliares/mortalidade , Estudos de Casos e Controles , Colangiocarcinoma/mortalidade , Endoscopia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Ablação por Radiofrequência , Estudos Retrospectivos , Stents , Taxa de Sobrevida , Resultado do Tratamento
19.
J Pain Symptom Manage ; 58(6): 1100-1112.e1, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31437475

RESUMO

CONTEXT: Individuals with cystic fibrosis (CF) frequently survive into adulthood, and many have multifaceted symptoms that impair quality of life. OBJECTIVE: We conducted a systematic review to investigate opportunities to improve utilization of palliative care among adults with CF. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until September 27, 2018, and reviewed references manually. Eligible articles were published in English, involved adults aged 18 years and older with CF, and contained original data regarding patient outcomes related to presence of advance care planning (ACP), symptom experience, and preferred and/or received end-of-life (EOL) care. RESULTS: We screened 652 article abstracts and 32 full-text articles; 12 studies met inclusion criteria. All studies were published between 2000 and 2018. Pertinent findings include that although 43% to 65% of adults with CF had contemplated completing ACP, the majority only completed ACP during their terminal hospital admission. Patients also reported high prevalence of untreated symptoms, with adequate symptom control reported in 45% among those with dyspnea, 22% among those with pain, and 51% among those with anxiety and/or depression. Prevalence of in-hospital death ranged from 62% to 100%, with a third dying in the intensive care unit. The majority received antibiotics and preventative treatments during their terminal hospitalization. Finally, treatment from a palliative care specialist was associated with a higher prevalence of patient completion of advanced directives, decreased likelihood of death in intensive care unit, and decreased use of mechanical ventilation at EOL. CONCLUSION: Adults with CF often have untreated symptoms, and many opportunities exist for palliative care specialists to improve ACP completion and quality of EOL care.


Assuntos
Fibrose Cística/terapia , Cuidados Paliativos/estatística & dados numéricos , Adulto , Planejamento Antecipado de Cuidados , Diretivas Antecipadas , Humanos , Assistência Terminal
20.
Dermatology ; 235(6): 516-521, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31387094

RESUMO

BACKGROUND: Little is known about the epidemiological characteristics of patients with advanced cutaneous squamous cell carcinoma (A-cSCC). OBJECTIVE AND METHOD: A retrospective study was conducted on a routine care cohort of 109 patients to identify the epidemiological factors associated with A-cSCC. RESULTS: The median age was 83 years (IQR: 73.9-89.8), and the median ECOG was 1 (IQR: 1-2). Sixty percent of the patients had a history of cardiac disease and 22% had cognitive disorders. Seventy-four percent of patients were from rural/semi-rural areas (towns of <15,000 residents) and 17% were living in nursing homes. The cSCC lesions were on the head and neck in 72% of cases. Thirty-seven percent of patients were not diagnosed until the disease was in an advanced stage, indicating a lack of cSCC identification. In the remaining 69 patients, 7% did not received treatment within 3 months of the cSCC being identified, 62% had an incomplete histological report, and 37% had incomplete treatment. CONCLUSION: A-cSCC is associated with incomplete initial treatment in an elderly and rural population with good general condition. We hypothesize that a lack of access to good dermatological expertise may have led to underestimation of the aggressiveness of cSCC and/or therapeutic mismanagement.


Assuntos
Carcinoma de Células Escamosas/diagnóstico , Carcinoma de Células Escamosas/patologia , Neoplasias de Cabeça e Pescoço/diagnóstico , Neoplasias de Cabeça e Pescoço/patologia , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/patologia , Idoso , Idoso de 80 Anos ou mais , Biópsia/estatística & dados numéricos , Carcinoma de Células Escamosas/epidemiologia , Carcinoma de Células Escamosas/terapia , Diagnóstico Tardio , Feminino , Neoplasias de Cabeça e Pescoço/epidemiologia , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Masculino , Estadiamento de Neoplasias , Cuidados Paliativos/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Estudos Retrospectivos , População Rural/estatística & dados numéricos , Pele/patologia , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/terapia , Tempo para o Tratamento
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