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Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

The authors comment on an article by M. Pyrrho, L. Cambraia, and V. F. de Vasconcelos on protecting privacy while optimizing the use of data. They talk about the increase in the possibilities for collecting, storing, and processing of data, the key principles in European data protection legislation, and the warning by Pyrrho, Cambraia, and de Vasconcelos on the conversion of data into economic value.

Background: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. Aim: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. Design: An online survey analysed using descriptive statistics. Setting/participants: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. Results: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. Conclusion: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations. [ABSTRACT FROM AUTHOR]

Purpose: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer., Methods: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores., Results: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium., Conclusion: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes., (© 2023. The Author(s).)

Objective: Even when medical treatments are limited, supporting patients' coping strategies could improve their quality of life. Greater understanding of patients' coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables., Methods: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance, and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used., Results: Data from 675 patients with stage III/IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age (β = 0.05; CI[0.023; 0.074]), and patients from Italy (β = 1.57 CI[0.760; 2.388]) and Denmark (β = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries., Conclusions: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients' coping strategies., (© 2019 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

To facilitate the future implementation of population-based cancer screening programmes in European countries, we summarised the experience gained from existing programmes across Europe. We listed points that citizens, advocacy groups, politicians, health planners, and health professionals should consider when planning, implementing and running population based cancer screening programmes. The list is general and is applicable to breast, cervical and colorectal cancer screening. It is based on evidence presented in the three European Union guidelines on quality assurance in cancer screening and diagnosis, supplemented with other literature and expert experience presented at a European Science Advisory Network for Health workshop. The implementation of a cancer screening programme should be divided into the following seven phases: (1) before planning, (2) planning, (3) feasibility testing, (4) piloting or trial implementation, (5) scaling up from pilot to service, (6) running of full-scale programme, and (7) sustainability. For each phase, a substantial number of specified conditions have to be met. Successful implementation of a cancer screening programme requires societal acceptance and local ownership along with the best evidence-based practise and verification of adequate performance in each phase of implementation., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document., (© 2011 Blackwell Publishing Ltd.)

Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shortening drugs to relieve symptoms than other patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.

Objective: To study and compare the incidence and main background characteristics of do-not-resuscitate (DNR) decision making in six European countries., Design: Retrospective., Setting: We studied DNR decisions simultaneously in Belgium (Flanders), Denmark, Italy (four regions), the Netherlands, Sweden, and Switzerland (German-speaking part). In each country, random samples of death certificates were drawn from death registries to which all deaths are reported. The deaths occurred between June 2001 and February 2002., Participants: Reporting physicians received a mailed questionnaire about the medical decision making that had preceded death. The response percentage was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. The total number of deaths studied was 20,480., Interventions: None., Measurements and Main Results: Measurements were frequency of DNR decisions, both individual and institutional, and patient involvement. Before death, an individual DNR decision was made in about 50-60% of all nonsudden deaths (Switzerland 73%, Italy 16%). The frequency of institutional decisions was highest in Sweden (22%) and Italy (17%) and lowest in Belgium (5%). DNR decisions are discussed with competent patients in 10-84% of cases. In the Netherlands patient involvement rose from 53% in 1990 to 84% in 2001. In case of incompetent patients, physicians bypassed relatives in 5-37% of cases., Conclusions: Except in Italy, DNR decisions are a common phenomenon in these six countries. Most of these decisions are individual, but institutional decisions occur frequently as well. In most countries, the involvement of patients in DNR decision making can be improved.

Background: Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient's life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics., Methods: Between June 2001 and February 2002, samples were obtained from deaths reported to registries in Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland. The reporting physician was then sent a questionnaire about the medical decision-making process that preceded the patient's death., Results: The incidence of nontreatment decisions, whether or not combined with other end-of-life decisions, varied widely from 6% of all deaths studied in Italy to 41% in Switzerland. Most frequently forgone in every country were hydration or nutrition and medication, together representing between 62% (Belgium) and 71% (Italy) of all treatments withheld or withdrawn. Forgoing treatment estimated to prolong life for more than 1 month was more common in the Netherlands (10%), Belgium (9%), and Switzerland (8%) than in Denmark (5%), Italy (3%), and Sweden (2%). Relevant determinants of treatment being withheld rather than withdrawn were older age (odds ratio [OR], 1.53; 95% confidence interval [CI], 1.31-1.79), death outside the hospital (death in hospital: OR, 0.80; 95% CI, 0.68-0.93), and greater life-shortening effect (OR, 1.75; 95% CI, 1.27-2.39)., Conclusions: In all of the participating countries, life-prolonging treatment is withheld or withdrawn at the end of life. Frequencies vary greatly among countries. Low-technology interventions, such as medication or hydration or nutrition, are most frequently forgone. In older patients and outside the hospital, physicians prefer not to initiate life-prolonging treatment at all rather than stop it later.