Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries

Background: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire. Methods: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months. Results: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, BosniaHerzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses. Conclusion: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a welldesigned dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research

Prognosis research strategy (PROGRESS) 1: a framework for researching clinical outcomes.

The PROGRESS series (www.progress-partnership.org) sets out a framework of four interlinked prognosis research themes and provides examples from several disease fields to show why evidence from prognosis research is crucial to inform all points in the translation of biomedical and health related research into better patient outcomes. Recommendations are made in each of the four papers to improve current research standards What is prognosis research? Prognosis research seeks to understand and improve future outcomes in people with a given disease or health condition. However, there is increasing evidence that prognosis research standards need to be improved Why is prognosis research important? More people now live with disease and conditions that impair health than at any other time in history; prognosis research provides crucial evidence for translating findings from the laboratory to humans, and from clinical research to clinical practice This first article introduces the framework of four interlinked prognosis research themes and then focuses on the first of the themes - fundamental prognosis research, studies that aim to describe and explain future outcomes in relation to current diagnostic and treatment practices, often in relation to quality of care Fundamental prognosis research provides evidence informing healthcare and public health policy, the design and interpretation of randomised trials, and the impact of diagnostic tests on future outcome. It can inform new definitions of disease, may identify unanticipated benefits or harms of interventions, and clarify where new interventions are required to improve prognosis

The Quality of Death: Ranking End-of-Life Care Across the World

As the proportion of the world's population grows disproportionately older, the need for end-of-life services will only increase. This paper ranks 40 countries in terms of the quality and availability of end-of-life care. For this paper, the author also conducted in-depth interviews with over 20 experts on the subject from across the world -- including palliative care specialists, physicians, healthcare economists and sociologists -- and reviewed existing research on the topic

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan

BackgroundTo support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005.MethodsWe analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care.ResultsThe booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care.ConclusionsWe identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.</div

Medical interpreting and the law in the European Union

In 2011, the Danish government announced that from June that year it would no longer cover the costs of medical interpreters for patients who had been living in Denmark for more than seven years. The Dutch Ministry of Health followed with an even more draconian approach; from 1 January 2012 the cost of translation and interpreting would no longer be covered by the state. These two announcements led to widespread concern about whether or not there is a legal foundation for interpreter provision in healthcare. This article considers United Nations treaties, conventions from the Council of Europe and European Union law. European Union member states have been slow to sign up to international agreements to protect the rights of migrant workers. The European Union itself has only recently moved into the area of discrimination and it is unclear if the Race Directive covers language. As a result, access to interpreters in healthcare, where it exists, is dependent on national anti-discrimination legislation or on positive action taken at national or local level rather than on European or international law

The annual recurrence risk model for tailored surveillance strategy in patients with cervical cancer

Purpose: Current guidelines for surveillance strategy in cervical cancer are rigid, recommending the same strategy for all survivors. The aim of this study was to develop a robust model allowing for individualised surveillance based on a patient's risk profile. Methods: Data of 4343 early-stage patients with cervical cancer treated between 2007 and 2016 were obtained from the international SCCAN (Surveillance in Cervical Cancer) consortium. The Cox proportional hazards model predicting disease-free survival (DFS) was developed and internally validated. The risk score, derived from regression coefficients of the model, stratified the cohort into significantly distinctive risk groups. On its basis, the annual recurrence risk model (ARRM) was calculated. Results: Five variables were included in the prognostic model: maximal pathologic tumour diameter; tumour histotype; grade; number of positive pelvic lymph nodes; and lymphovascular space invasion. Five risk groups significantly differing in prognosis were identified with a five-year DFS of 97.5%, 94.7%, 85.2% and 63.3% in increasing risk groups, whereas a two-year DFS in the highest risk group equalled 15.4%. Based on the ARRM, the annual recurrence risk in the lowest risk group was below 1% since the beginning of follow-up and declined below 1% at years three, four and >5 in the medium-risk groups. In the whole cohort, 26% of recurrences appeared at the first year of the follow-up, 48% by year two and 78% by year five. Conclusion: The ARRM represents a potent tool for tailoring the surveillance strategy in early-stage patients with cervical cancer based on the patient's risk status and respective annual recurrence risk. It can easily be used in routine clinical settings internationally

Achieving thoracic oncology data collection in Europe : a precursor study in 35 countries

Background: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire. Methods: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months. Results: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia- Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses. Conclusion: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a welldesigned dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research

Growth without prosperity

Estonia’s post-socialist economic performance has been exemplary. Its liberal economy regularly outranks other Central and Eastern European economies, as well as numerous ‘Western’ economies in terms of competitiveness and economic freedom. The neoliberal virtues of small government, laissez-faire macroeconomic policies and international openness have all been reflected in its economy’s transformation. However, it is arguable whether the country’s economic success has been translated into a similar improvement in welfare. Using Estonia as a case, I argue that whereas the neoliberal shock therapy can be an effective tool for quick market-oriented reforms, its long-term use has adverse socio-economic impacts

Vliv paliativního nemocničního týmu na finanční nákladnost a kvalitu péče o pacienty v závěru života

This dissertation thesis describes the end-of-life care in hospital setting and compare the dying phase with and without specialist palliative care support. The second part of the thesis focus on quality of care improvement by using patient reported outcome measures (PROMS). To increase the quality of symptom assessment in palliative care the routine use of PROMS is recommended. Aims The first study aimed to compare costs of terminal hospitalization and quality of care between the group of patients with and without support of a palliative care team. The second study aimed to provide translation, cultural adaptation and validation of IPOS- renal measure, which is patient reported outcome measure used for patients with advanced chronic renal disease. Methods The first study was a descriptive retrospective case-control study. We explored the difference in daily hospital costs between patients who died with and without the support of the hospital palliative care team. As secondary outcomes, we compared the groups over the duration of the terminal hospitalization, intensive care unit days, intravenous antibiotics, MR/CT scans, oncologic treatment, preferences and limitation of care and family support. In the second study the IPOS-renal was translated to Czech and culturally adapted using cognitive...Souhrn Tato disertační práce srovnává péči v závěru života v nemocnici při zapojení paliativní péče a bez ní. Druhá část práce se zaměřuje na zlepšení kvality života nemocných používáním nástrojů s využitím pacientem reportovaných dat. Používání těchto nástrojů je doporučováno k rutinnímu klinickému hodnocení obtíží pacienta. Cíl Cílem první studie je srovnání kvality péče a nákladovosti terminální hospitalizace při zapojení paliativní péče a bez ní. Cílem druhé studie je provést překlad, kulturní adaptaci a validaci nástroje IPOS-renal, co je nástroj používaný k reportování potíží pacientů s pokročilým chronickým onemocněním ledvin. Metodika První studie byla deskriptivní studií případů a kontrol. Sledovali jsme rozdíl v denních hospitalizačních nákladech mezi skupinou pacientů zemřelých bez paliativní intervence a s ní. Jako sekundární výsledky jsme srovnávali skupiny v trvání hospitalizace, v dnech strávených v intenzivní péči, užití intravenózních antibiotik, CT/MR vyšetření, onkologické léčby, dokumentaci preferencí a limitace péče a podpory rodin umírajících. V druhé studii jsme přeložili IPOS-renal do češtiny a kulturně ho adaptovali s použitím kognitivního testování. V průběhu validační studie jsme testovali vnitřní konzistenci použitím Cronbach's alpha koeficientu, spolehlivost použitím intraclass...I.interní klinika1st Department of Internal MedicineThird Faculty of Medicine3. lékařská fakult