BackgroundNo data exist on the size of the population potentially in need of palliative care in Germany. The aim of this study is to estimate the size of the German population that may benefit from palliative care.MethodBased on existing population-based methods (Rosenwax and Murtagh), German death registration data were analyzed and contrasted with international results. The data include all death cases in 2013 in Germany.ResultsAccording to the method Rosenwax defined, between 40.7 % (minimal estimate) and 96.1 % (maximal estimate) of death cases could benefit from palliative care. The estimation, based on Murtagh’s refined method, results in 78.0 % of death cases potentially being eligible for palliative care. The percentage of potential palliative care candidates is conditioned by age. Based on the Murtagh Method, in the age category between 30 and 39 years, a potential demand for palliative care can be found for 40.4 % percent of all deaths occurring in this age category, with this number increasing to 80.3 % in the age bracket of 80 years and over.ConclusionAn estimation of the size of the population in need is essential for healthcare planning. Therefore, our data serve as a guide and starting point for further research.

IntroductionInternational standards of care require the complete integration of psycho-oncological care into biomedical cancer treatment. The structured integrated, cross-sectoral psycho-oncological programme ‘isPO’ is aiming to ensure a provision of care in inpatient and outpatient settings according to a stepped-care approach. Up to now, psycho-oncological care is missing regulated and standardised processes to demonstrate the effectiveness. This study protocol describes the process and outcome evaluation that is conducted, along with the isPO study. The programme evaluation is aiming to proof effectiveness, explain potential discrepancies between expected and observed outcomes. Additionally, provide insight into the implementation process, as well as contextual factors that might promote or inhibit the dissemination and implementation of the stepped care programme will be gained. In addition to these measures, a cost–consequence analysis will provide further evidence aimed at integrating psycho-oncological care into primary healthcare.Methods and analysisThe evaluation concept is based on a tripartite strategy consisting of a prospective, formative and summative evaluation. To capture all determinants, a concurrent mixed-method design is applied comprising qualitative (interviews and focus groups) and quantitative (standardised questionnaires) surveys of patients and healthcare providers. In addition, analysis of the psycho-oncological care data (isPO care data) and statutory health insurance claims data will be conducted. Primary and secondary data will complement one another (data linkage) to obtain a more comprehensive picture of the effectiveness and implementation of the complex intervention within the isPO study.Ethics and disseminationThe study has been approved by the ethics committee of the Medical Faculty of the University of Cologne. For all collected data, the relevant national and European data protection regulations will be considered. All personal identifiers (eg, name, date of birth) will be pseudonymised. Dissemination strategies include annual reports as well as quality workshops for the organisations, the presentation of results in publications and on conferences, and public relations.Trial registration numberDRKS00015326; Pre-results.

ZusammenfassungDas personenbezogene Verknüpfen verschiedener Datenquellen (Datenlinkage) für Forschungszwecke findet in den letzten Jahren in Deutschland zunehmend Anwendung. Jedoch fehlen hierfür konsentierte methodische Standards. Ziel dieses Beitrages ist es, solche Standards für Forschungsvorhaben zu definieren. Eine weitere Intention ist es, dem Lesenden eine Checkliste zur Bewertung geplanter Forschungsvorhaben und Artikel bereitzustellen. Zu diesem Zweck hat eine aus Mitgliedern verschiedener Fachgesellschaften zusammengesetzte Expertengruppe seit 2016 insgesamt 7 Leitlinien mit 27 konkreten Empfehlungen erstellt. Die Gute Praxis Datenlinkage beinhaltet die folgenden Leitlinien: (1) Forschungsziele, Fragestellung, Datenquellen und Ressourcen, (2) Dateninfrastruktur und Datenfluss, (3) Datenschutz, (4) Ethik, (5) Schlüsselvariablen und Linkageverfahren, (6) Datenprüfung/Qualitätssicherung sowie (7) Langfristige Datennutzung für noch festzulegende Fragestellungen. Jede Leitlinie wird ausführlich diskutiert. Zukünftige Aktualisierungen werden wissenschaftliche und datenschutzrechtliche Entwicklungen berücksichtigen.

Background To bridge the physical distance between parents and children during a neonatal intensive care unit (NICU) stay, webcams are used in few German NICUs. They allow parents to view their infant even when they cannot be present on the ward. The aim of the study was to explore the factors for and against webcam use that parents with or without webcam use encountered. Methods Guideline-based, semi-structured qualitative interviews were conducted in the period from September 2019 to August 2020. Interview transcripts were analysed using a category-based content analysis. The categories were generated in a combined deductive–inductive procedure. Results We interviewed 33 mothers and seven fathers. Parents with webcam experience emphasised positive aspects concerning their webcam use. Factors that increased webcam acceptance included feeling certain about the child’s well-being and an increased sense of proximity. Only a few critical voices emerged from parents who had webcam experience, e.g. regarding privacy concerns. Parents who had no experience with webcam use showed ambivalence. On the one hand, they expressed a positive attitude towards the webcam system and acknowledged that webcam use could result in feelings of control. On the other hand, reservations emerged concerning an increase of mental stress or a negative influence on parental visitation behaviour. Conclusion In addition to the parents’ positive experiences with webcam use, results show a need within parents who lacked webcam experience. Despite some criticism, it was evident that webcam use was primarily seen as an opportunity to counteract the negative consequences of separation in the postnatal phase. Trial registration The Neo-CamCare study is registered at the German Clinical Trials Register. DRKS-ID: DRKS00017755. Date of Registration in DRKS: 25-09-2019.

ObjectivesTo set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.DesignCross-sectional postbereavement survey.SettingRegional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.Participants351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.ResultsFor the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).ConclusionsFollowing those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.Trial registration numberDRKS00011925.

Background Hemodialysis (HD) and peritoneal dialysis (PD) are equivalent treatment alternatives for patients with end stage renal disease. In Germany, there is a legal obligation to inform every patient about all treatment alternatives and their possible harms and benefits. However, there is a low utilization of PD. Therefore, the question arises, whether HD patients perceive that they were informed about different dialysis options. We further investigate, if personal characteristics of informed and non-informed patients vary, and if both groups experienced the decision for their dialysis treatment as shared decision making (SDM). Methods The database was a nationwide postal survey of 590 HD patients from two statutory health insurers in Germany. Participants were asked whether they have been informed about both dialysis options. A logistic regression model examines impact factors on this information. We investigate differences in the German version of the 9-item SDM Questionnaire (SDM-Q-9) between informed and non-informed patients with a multivariate linear regression model. Results 56 % of the respondents reported they had been informed about different dialysis treatment options. Patients older than 65 had a 61 % lower chance than patients ≤ 65 for this information (p < 0.001). High educated patients had a 47 % higher chance for this information than patients with low education level (p = 0.030). Informed patients rated a higher SDM-Q-9 scores than non-informed patients (76.9 vs. 44.2; p < 0.001). Non-informed patients showed high values in those SDM-Q-9 items which had no regard to different treatment options. Conclusions A great proportion of HD patients – mostly elderly patients and patients with a low education level – did not perceive that they were informed about different dialysis options before dialysis was initiated. The current obligation to provide information about all treatment alternatives in Germany is a first step to assure the unselected access to different treatment options. But it has not reached routine application in health care yet. Information about different treatment options can pave the way for SDM. While SDM is considered to be a valuable tool in clinical medicine, there is still room for improvement for its successful implementation when it comes to decision making on different dialysis treatment options. Trial registration The MAU-PD study (Multidimensional analysis of causes for the low prevalence of ambulatory peritoneal dialysis in Germany) is registered at the German Clinical Trials Register. DRKS-ID: DRKS00012555 Link: https://www.drks.de/drks_web/setLocale_EN.do. Date of Registration in DRKS: 2018/01/04.

Background: Since 2000, systemic thrombolysis has been the only approved curative and causal treatment for acute ischemic stroke. In 2009, the guidelines of the German Society for Neurology were updated and the therapeutic window for performing thrombolysis was extended. The implementation of new therapies is influenced by many factors. We analyzed the factors at the organizational level that influence the implementation of thrombolysis in stroke patients. Methods: The data published by the majority of German hospitals in their structured quality reports was assessed. We calculated a regression model in order to measure the influence of hospital/department-level characteristics (e.g., teaching status, ownership, location, and number of hospital beds) on the implementation of thrombolysis in 2006 (this is the earliest point in time that can be analyzed on this data basis). In order to measure the effect of the guideline update in 2009 on the thrombolysis rate (TR) change between 2008 and 2010, we performed a Wilcoxon signed-rank test and utilized a regression model.

Background: General practitioners (GPs) are important providers and coordinators of palliative home care (PHC). Through this double role, their perspectives and their treatment decisions influence PHC fundamentally. This study aims to gain deeper insights into GPs’ perspectives regarding PHC in North Rhine, Germany. Methods: An explorative, semistructured focus group was conducted with 7 doctors. The researchers performed content analysis. Main topics were GPs’ role definition in PHC and GPs’ medical activities in PHC. Results: Participating GPs describe their role in PHC, based on high motivation and positive attitudes toward PHC as a hybrid role: coordinator, provider (mostly in general PHC), and referrer (gateway to palliative care [PC] specialists). According to GPs’ medical activity, participants describe moderate expertise, demanding tasks, and elaborate PHC provision for GPs. Participants stressed the importance of PC in GPs’ work. But also PC is a small field in general practice. GPs’ PHC benefits from the deep trust resulting from the often close and long-term GP–patient relationship. Complexity and bureaucracy of PHC structures as well as the lack of resources and multidisciplinary cooperation are named as barriers for providing PHC. The highest level of care is reached in specialized PHC, which only very few, severely impaired patients need. Conclusions: Participating GPs see themselves as important PHC providers as well as referrers and coordinators. Complexity and discontinuity in PC arrangements create challenges for their provision. Therefore, they long for reduced bureaucratic burdens.