In pediatric advanced cancer,i.e.,when cancer-targeted treatments are not effective,care provided to patients is of palliative nature.It aims at limiting symptoms and optimizing quality of life(QoL).To orient care,it ...In pediatric advanced cancer,i.e.,when cancer-targeted treatments are not effective,care provided to patients is of palliative nature.It aims at limiting symptoms and optimizing quality of life(QoL).To orient care,it is necessary to know and measure what is really important for young people.Unfortunately,tools are still scarce in this context.The aim of this paper is to describe the development process of a new QoL assessment method,the Advance QoL program.This is specifically designed for the clinical context of pediatric advanced cancer.Three previous studies carried out by our team identified seven important QoL domains for this population.We developed a tool named Advance QoL—parent/caregiver version.A current study aims to develop self-reported versions of the Advance QoL for children(8-12 years)and adolescents(13-18 years)with advanced cancer.In the very near future,the Advance QoL tool will be available in three versions(parents/caregivers,children,and adolescents)ready to be tested in validation studies.Regular assessment of the QoL of young people with cancer is a central process in defining targets for care and should be carried out throughout the trajectory,including when cancer is at an advanced stage,i.e.,when no standard treatment options are available.展开更多
Background:Information on the possibility of drawing up Advance Directives(AD)is a necessity,and represents a major medical,ethical,and legal challenge.The difficulties are numerous,both organizational and cultural,an...Background:Information on the possibility of drawing up Advance Directives(AD)is a necessity,and represents a major medical,ethical,and legal challenge.The difficulties are numerous,both organizational and cultural,and this is also true in the context of oncology,where ADs(and more broadly,advanced palliative care)are of critical importance.As an eminently sensitive subject,dealing with ADs(and therefore with end-of-life issues)requires both societal and medical/health-care acculturation.An institutional approach has therefore been developed,to deploy information tools,training professionals,and formalize the collection of AD.Such an approach cannot be implemented without an assessment not only of its objective results but also above all of its psychological effects,on both users(patients,family caregivers)and professionals.Methods:This longitudinal study,based on a mixed-method,interdisciplinary approach,will assess the impact of this information dissemination on AD,in terms of both potential positive and negative effects,using validated measurement methods.Thus,this study follows the 5 criteria of the RE-AIM model,designed to analyze the interest and impact of a device intended for users of the healthcare system;we will use a mixed methodology,relying on both a quantitative component(counting the number of people benefiting from the scheme,and those requesting support in drawing up their DA...,administering questionnaires),as well as a qualitative component(focus groups)which will enable us to study the subjective experiences of users,their relatives and the professionals involved in the scheme.Results:The results of this study will make it possible to determine the effects of this system of assistance in the drafting of ADs,which is currently being promoted by the legislator,but which is struggling to be implemented.展开更多
Objective This study aims to test the acceptance, feasibility, and usefulness of the Arabic version of the revised Edmonton Symptom AssesSment System （ESAS-r） among Egyptian patients with advanced cancer and to comp...Objective This study aims to test the acceptance, feasibility, and usefulness of the Arabic version of the revised Edmonton Symptom AssesSment System （ESAS-r） among Egyptian patients with advanced cancer and to compare the rates of symptoms documented by patients and physicians. Methods Between August 2014 and February 2015, a total of 140 patients at Ain Shams University Hospitals in Cairo, Egypt received the Arabic version of the ESAS-r. For each patient, the ESAS-r was completed twice, first by the treating physician （as part of the basic assessment） and a second time by the patient, with a maximum of 2 hours between the two assessments. An additional survey was included to assess patients＇ acceptance of the survey and their preferences. Results Out of 140 enrolled patients in the study, 11 patients refused to complete the questionnaire, and 10 patients were excluded due to incomplete records in their medical records. Complete data was retrieved for 119 patients who were included for further analyses. The 78 （65%） patients declared that the test was clear and easy to complete. They were able to answer the test without help. Collectively, tiredness and sense of well-being were the most commonly encountered symptoms in ratings obtained by both patients and physicians. Tiredness was the only symptom showing a significant difference between the two rating methods, patient-rated scores being higher （P = 0.032）. Cronbach＇s alpha showed that both tests com- pleted by the physician and the patients were internally consistent： the physician-rated test had a coefficient of 0.877, and the patient-rated test had a coefficient of 0.863. All ESAS scores had good internal consis- tency, with a Cmnbach＇s alpha coefficient of 0.88. The internal consistency remained high after removal of individual symptom scores, with Cronbach＇s alpha coefficients ranging from 0.823 to 0.902, indicating that no individual question had undue influence on the total ESAS score. Conclusion The ESAS-r was easily understood by and applicable to patients. There was no significant discrepancy in the rates of symptoms reported by the patients and physicians, apart from tiredness. Based on this, the test could be applied on a larger scale with in-home patients. This test can be cost-effective and can decrease the number of hospital visits among advanced cancer patients in need of supportive treat- ment rather than active cancer therapy.展开更多
预立医疗照护计划(advance care planning,ACP)旨在确保丧失自主决策权的患者获得符合其期待和偏好的医疗服务。晚期癌症人群是ACP实施的关键人群,然而目前在中国的实践现状欠佳,亟需高质量的实施证据加强ACP在晚期癌症患者人群的临床...预立医疗照护计划(advance care planning,ACP)旨在确保丧失自主决策权的患者获得符合其期待和偏好的医疗服务。晚期癌症人群是ACP实施的关键人群,然而目前在中国的实践现状欠佳,亟需高质量的实施证据加强ACP在晚期癌症患者人群的临床实践。现有文献可汇总为干预时间、干预内容、干预人员、干预模式、沟通技巧、结局指标和环境支持7个维度的27条证据,为促进晚期癌症患者ACP实施提供了重要依据。后续研究需结合患者意愿,从传统文化、ACP宣教与培训、健全立法和医疗系统等多层面探索适合中国晚期癌症人群ACP的最佳实施策略。展开更多
基金Le programme Advance QoL aétéfinancépar la Fondation du CHU Sainte-Justine,par le Réseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL,Projet pilote 2018)par la Fondation Coast-to-Coast Canada et par les Instituts de recherche en santédu Canada (IRSC).
文摘In pediatric advanced cancer,i.e.,when cancer-targeted treatments are not effective,care provided to patients is of palliative nature.It aims at limiting symptoms and optimizing quality of life(QoL).To orient care,it is necessary to know and measure what is really important for young people.Unfortunately,tools are still scarce in this context.The aim of this paper is to describe the development process of a new QoL assessment method,the Advance QoL program.This is specifically designed for the clinical context of pediatric advanced cancer.Three previous studies carried out by our team identified seven important QoL domains for this population.We developed a tool named Advance QoL—parent/caregiver version.A current study aims to develop self-reported versions of the Advance QoL for children(8-12 years)and adolescents(13-18 years)with advanced cancer.In the very near future,the Advance QoL tool will be available in three versions(parents/caregivers,children,and adolescents)ready to be tested in validation studies.Regular assessment of the QoL of young people with cancer is a central process in defining targets for care and should be carried out throughout the trajectory,including when cancer is at an advanced stage,i.e.,when no standard treatment options are available.
文摘Background:Information on the possibility of drawing up Advance Directives(AD)is a necessity,and represents a major medical,ethical,and legal challenge.The difficulties are numerous,both organizational and cultural,and this is also true in the context of oncology,where ADs(and more broadly,advanced palliative care)are of critical importance.As an eminently sensitive subject,dealing with ADs(and therefore with end-of-life issues)requires both societal and medical/health-care acculturation.An institutional approach has therefore been developed,to deploy information tools,training professionals,and formalize the collection of AD.Such an approach cannot be implemented without an assessment not only of its objective results but also above all of its psychological effects,on both users(patients,family caregivers)and professionals.Methods:This longitudinal study,based on a mixed-method,interdisciplinary approach,will assess the impact of this information dissemination on AD,in terms of both potential positive and negative effects,using validated measurement methods.Thus,this study follows the 5 criteria of the RE-AIM model,designed to analyze the interest and impact of a device intended for users of the healthcare system;we will use a mixed methodology,relying on both a quantitative component(counting the number of people benefiting from the scheme,and those requesting support in drawing up their DA...,administering questionnaires),as well as a qualitative component(focus groups)which will enable us to study the subjective experiences of users,their relatives and the professionals involved in the scheme.Results:The results of this study will make it possible to determine the effects of this system of assistance in the drafting of ADs,which is currently being promoted by the legislator,but which is struggling to be implemented.
文摘Objective This study aims to test the acceptance, feasibility, and usefulness of the Arabic version of the revised Edmonton Symptom AssesSment System （ESAS-r） among Egyptian patients with advanced cancer and to compare the rates of symptoms documented by patients and physicians. Methods Between August 2014 and February 2015, a total of 140 patients at Ain Shams University Hospitals in Cairo, Egypt received the Arabic version of the ESAS-r. For each patient, the ESAS-r was completed twice, first by the treating physician （as part of the basic assessment） and a second time by the patient, with a maximum of 2 hours between the two assessments. An additional survey was included to assess patients＇ acceptance of the survey and their preferences. Results Out of 140 enrolled patients in the study, 11 patients refused to complete the questionnaire, and 10 patients were excluded due to incomplete records in their medical records. Complete data was retrieved for 119 patients who were included for further analyses. The 78 （65%） patients declared that the test was clear and easy to complete. They were able to answer the test without help. Collectively, tiredness and sense of well-being were the most commonly encountered symptoms in ratings obtained by both patients and physicians. Tiredness was the only symptom showing a significant difference between the two rating methods, patient-rated scores being higher （P = 0.032）. Cronbach＇s alpha showed that both tests com- pleted by the physician and the patients were internally consistent： the physician-rated test had a coefficient of 0.877, and the patient-rated test had a coefficient of 0.863. All ESAS scores had good internal consis- tency, with a Cmnbach＇s alpha coefficient of 0.88. The internal consistency remained high after removal of individual symptom scores, with Cronbach＇s alpha coefficients ranging from 0.823 to 0.902, indicating that no individual question had undue influence on the total ESAS score. Conclusion The ESAS-r was easily understood by and applicable to patients. There was no significant discrepancy in the rates of symptoms reported by the patients and physicians, apart from tiredness. Based on this, the test could be applied on a larger scale with in-home patients. This test can be cost-effective and can decrease the number of hospital visits among advanced cancer patients in need of supportive treat- ment rather than active cancer therapy.
文摘预立医疗照护计划(advance care planning,ACP)旨在确保丧失自主决策权的患者获得符合其期待和偏好的医疗服务。晚期癌症人群是ACP实施的关键人群,然而目前在中国的实践现状欠佳,亟需高质量的实施证据加强ACP在晚期癌症患者人群的临床实践。现有文献可汇总为干预时间、干预内容、干预人员、干预模式、沟通技巧、结局指标和环境支持7个维度的27条证据,为促进晚期癌症患者ACP实施提供了重要依据。后续研究需结合患者意愿,从传统文化、ACP宣教与培训、健全立法和医疗系统等多层面探索适合中国晚期癌症人群ACP的最佳实施策略。
