Post-stroke care after medical rehabilitation in Germany: a systematic literature review of the current provision of stroke patients.

BACKGROUND: Although Germany's acute care for stroke patients already has a good reputation, continuous follow-up care is still not widely available, a problem originating in the strict separation of inpatient and outpatient care. This gap in the German health care system does not just lead to patients' potential readmission to inpatient care and compromise the sustainability of what they have accomplished during medical rehabilitation; it also places a burden on caregivers. METHODS: To illustrate the current procedures on follow-up care of stroke patients in Germany, a systematic literature search was conducted to gather all available evidence. Research articles in the English or German language were searched between 2007 and 2017. Different study designs ranging from non-experimental descriptive studies, expert reports and opinions were included and categorised by two independent researchers. Relevant data was electronically searched through international and national databases and incorporated in a summary grid to investigate research outcomes and realise a narrative synthesis. RESULTS: A literature search was conducted to identify all relevant information on how current follow-up care is carried out and evaluated in Germany. We identified no systematic reviews on this topic, but included a total of 18 publications of various original studies, reviews and expert opinions. Included study populations also differed in either: experts, caregivers or stroke patients, including their viewpoints on the outpatient care situation of stroke patients; to capture their need for assistance or to investigate caregivers need and use for assistance. So far there is no standardised follow-up care in Germany, but this review reveals that multidisciplinary cooperation within occupational groups in outpatient rehabilitation is a key item that can influence and improve the follow-up care of stroke patients. CONCLUSION: This review was conducted to provide a broadly based overview of the current follow-up care of stroke patients in Germany. Both the new implementation of a standardised, discharge service that supports early support, to be initiated this year and numerous approaches are promising steps into the right direction to close the follow-up gap in German health care provision.

Palliative care for patients with heart failure: facilitators and barriers - a cross sectional survey of German health care professionals.

BACKGROUND: Compared to patients with cancer, heart failure patients are seldom candidates for palliative care. Numerous studies have investigated reasons why heart failure patients do not receive palliative care; however, none of these studies have ever evaluated the situation in the German health care setting. This study aims to identify German healthcare providers' (HCP) perception of barriers and facilitators to palliative care of patients with chronic heart failure. METHODS: We conducted an online-survey with 315 nurses and physicians of different medical disciplines. RESULTS: Even though heart failure patients' need of palliative care and its advantages has been recognized, HCP see potential for development and improvement. A lack of knowledge about the content and measures of palliative care, poor communication and unclear responsibilities between medical disciplines, difficulties to determine the right time to initiate palliative care, and the feeling not to be prepared to discuss end-of-life issues with the patient has been identified as barriers. Further, HCP believe that patients and relatives do not possess adequate knowledge about the disease and its progression and are therefore unprepared in asking questions regarding palliative care. They rather tend to demand everything possible to be done in order prolong life, and are reluctant to accept that life is limited. Overall, HCP perceive that dying is a taboo subject within our society placing palliative care on the same level as assisted dying. In addition, results indicate that HCP have an inappropriate notion of ideal medicine fearing to lose patient and are worried about the appropriateness of PC remuneration. CONCLUSIONS: In order to overcome the described barriers, HCP, patients, and relatives need to be educated in palliative care. Information and education encompassing the aim, content and measures of palliative care needs to be provided for all parties in order to optimize patient care, to foster communication between healthcare professionals, patients, and relatives, and to overcome perceived barriers. TRIAL REGISTRATION: DRKS00007119.

Ranking of Palliative Care Development in the Countries of the European Union.

CONTEXT: There is growing interest in monitoring palliative care (PC) development internationally. One aspect of this is the ranking of such development for comparative purposes. OBJECTIVES: To generate a ranking classification and to compare scores for PC development in the countries of the European Union, 2007 and 2013. PC "development" in this study is understood as a combination of the existence of relevant services in a country ("resources") plus the capacity to develop further resources in the future ("vitality"). METHODS: "Resources" comprise indicators of three types of PC services per population (inpatient palliative care units and inpatient hospices, hospital support teams, and home care teams). "Vitality" of PC is estimated by numerical scores for the existence of a national association, a directory of services, physician accreditation, attendances at a key European conference and volume of publications on PC development. The leading country (by raw score) is then considered as the reference point against which all other countries are measured. Different weightings are applied to resources (75%) and vitality (25%). From this, an overall ranking is constructed. RESULTS: The U.K. achieved the highest level of development (86% of the maximum possible score), followed by Belgium and overall The Netherlands (81%), and Sweden (80%). In the resources domain, Luxembourg, the U.K., and Belgium were leading. The top countries in vitality were Germany and the U.K. In comparison to 2007, The Netherlands, Malta, and Portugal showed the biggest improvements, whereas the positions of Spain, France, and Greece deteriorated. CONCLUSION: The ranking method permitted a comparison of palliative care development between countries and shows changes over time. Recommendations for improving the ranking include improvements to the methodology and greater explanation of the levels and changes it reveals.

Policy on palliative care in the WHO European region: an overview of progress since the Council of Europe's (2003) recommendation 24.

BACKGROUND: With the goal of achieving greater unity and coherence, the Council of Europe developed a national palliative care (PC) policy framework-Recommendation (2003) 24. Although directed at member states, the policy spread to the wider World Health Organisation (WHO) European Region. This article aims to present the current situation relating to national PC health policies in European countries. METHODS: A cross-sectional survey was conducted in 53 European countries of the WHO European Region. Relevant data reported (i) the existence of official documents concerning the provision of PC; (ii) the role of health departments and policymakers in the evaluation of PC provision and (iii) the availability of financial resources for PC provision. RESULTS: In total, 46/53 (87%) EU and non-EU countries responded. PC legislation is established in 20 (71%) EU and nine (50%) non-EU countries. A total of 12 (43%) EU countries possess a PC plan or strategy in comparison with six (33%) non-EU countries. Individuals from Departments of Health and designated policymakers have established collaborative PC efforts. Quality systems have been initiated in 15 (54%) EU and four (22%) non-EU countries. Significant differences were not found in the reporting of payments for PC services between European regions. CONCLUSION: An improvement in national PC policy in both EU and non-EU countries was observed. Future priorities include potential initiatives to improve relationships with policymakers, establish quality control programmes and ensure financial support for PC.

Palliative Care Medical Education in European Universities: A Descriptive Study and Numerical Scoring System Proposal for Assessing Educational Development.

CONTEXT: The lack of palliative medicine (PM) education has been identified as a barrier to the development of the discipline. A number of international institutions have called for its implementation within undergraduate medical curricula. OBJECTIVES: The objectives are to describe the situation of undergraduate PM education in Europe and to propose a scoring system to evaluate its status. METHODS: This descriptive study was conducted with data provided by key experts from countries of the World Health Organization European Region (n = 53). A numerical scoring system was developed through consensus techniques. RESULTS: Forty-three countries (81%) provided the requested information. In 13 countries (30%), a PM course is taught in all medical schools, being compulsory in six of them (14%). In 15 countries (35%), PM is taught in at least one university. In 14 countries (33%), PM is not taught within medical curricula. A full professor of PM was identified in 40% of countries. Three indicators were developed to construct a scale (rank 0-100) of educational development: 1) proportion of medical schools that teach PM (weight = 32%); 2) proportion of medical schools that offer PM as a compulsory subject (weight = 40%); 3) total number of PM professors (weight = 28%). The highest level of PM educational development was found in Israel, Norway, the U.K., Belgium, France, Austria, Germany, and Ireland. CONCLUSION: PM is taught in a substantial number of undergraduate medical programs at European universities, and a qualified teaching structure is emerging; however, there is a wide variation in the level of PM educational development between individual countries.

Testing feasibility and reliability of a set of quality indicators to evaluate the organization of palliative care across Europe: a pilot study in 25 countries.

BACKGROUND: A well-organized palliative care service is a prerequisite for offering good palliative care. Reliable and feasible quality indicators are needed to monitor the quality of their organization. AIM: To test feasibility and reliability of a previously developed set of quality indicators in settings and services that provide palliative care across Europe. METHODS: A total of 38 quality indicators, applicable in all types of settings, rated in a RAND Delphi process, and operationalized into 38 yes/no questions, were used. Descriptives statistics, factor and reliability analyses, analysis of variance, and chi-square analyses were used. DESIGN: Cross-sectional online survey. SETTING/PARTICIPANTS: Questionnaires were sent to representatives of 217 palliative care settings in 25 countries. Included settings were hospices, inpatient dedicated palliative care beds, palliative care outpatient clinics, palliative care units, day care centers for palliative care, palliative care home support teams, inpatient palliative care support teams, care homes, and nursing homes. RESULTS: All invited 25 European Association of Palliative Care countries took part. In total, 107 out of 217 participants responded (57%). The quality indicators were reduced to four coherent sub-scales, being "equipment and continuity of care," "structured documentation of essential palliative care elements in the medical record," "training and appraisal of personnel," and "availability of controlled drugs." No significant differences in quality criteria between the different types of settings and services were identified. CONCLUSION: The set of quality indicators appeared to measure four reliable domains that assess the organization of different palliative care settings. It can be used as a starting point for quality improvement activities.

Volunteers in Palliative Care - A Comparison of Seven European Countries: A Descriptive Study.

OBJECTIVE: In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. DESIGN/SETTING/METHODS: A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. RESULTS: In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. CONCLUSION: This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems.

Face-validation of quality indicators for the organization of palliative care in hospitals in Indonesia: a contribution to quality improvement.

PURPOSE: Quality indicators (QIs) for the organization of palliative care (PC) can contribute to quality improvement as they assess the key elements for adequate organization of care. They might differ between health care organization, cultures and economic resources. The aim of this study was face-validate an Indonesian set of QIs based on a European set, to compare the two sets of QIs and to test the applicability of Indonesian set. METHODS: A modified two-round RAND Delphi process was conducted in Indonesia. Twenty-four health care professionals from different disciplines were invited as panellists to rate clarity and usefulness of 98 QIs. Next, a applicability pilot test took place in five hospitals. RESULTS: A total of 21 panellists considered 76 QIs (78 %) face-valid and added two new ones. Of the QIs with the highest ratings, eight were evaluated by head nurses and two by reviewing 50 patient records. Each QI was met by at least two hospitals, and only one by all five. Regarding the two QIs on structured clinical record keeping, most medical records contained multidimensional aspects of care. CONCLUSIONS: We found that most QIs for the organization of PC developed for European countries were also considered face-valid for Indonesian hospitals. The top 10 QIs were applicable in Indonesia. This suggests that most of the organizational QIs are universal rather than country specific. The Indonesian set of QIs should be considered as a first step in developing, testing, and implementing a set of QIs for PC in Indonesia. We recommend validation in other Asian regions.

Validation of quality indicators for the organization of palliative care: a modified RAND Delphi study in seven European countries (the Europall project).

BACKGROUND: Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparative manner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliative care settings exists. AIM: To develop and validate a set of structure and process indicators for palliative care settings in Europe. DESIGN: A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of 110 quality indicators. SETTING/PARTICIPANTS: In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries. RESULTS: In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: the definition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructure to deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative care services (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safety procedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator). CONCLUSION: The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure and compare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliative care, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project.

Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study.

BACKGROUND: According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. METHODS: In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. RESULTS: In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. CONCLUSIONS: Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe.

Development of a set of process and structure indicators for palliative care: the Europall project.

BACKGROUND: By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. METHODS: As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. RESULTS: The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. CONCLUSIONS: We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.