Open Access

Aim of the study: The "WAVES" study (Widening Aims and giving patients a Voice for Expanded Structures in breast cancer care developed jointly by patients and physicians) aims to illuminate current breast cancer care structures with special focus on physician-patient-communication. Methods: The study is conducted within and funded by the BZKF (Bavarian Center for Cancer Research). Here, we present the results of the first preplanned analysis of the survey designed together with patients and patient advocates with the aim of adequately reflecting patients concerns. It is based on the evaluation of the first 1.000 patients who participated between 05/2022 and 08/2023, focusing on the duration of the first diagnosis consultation. Results: The participants were between 23 and 89 years old (mean: 59.18 years). There was a significant association between longer initial consultation duration and higher patient satisfaction (p < 0.001). When the first consultation lasted 30 minutes or more, patients stated more frequently that they felt better informed (p < 0.001) and had fully or substantially understood the content (p < 0.001). Conclusion: These results demonstrate a significantly higher satisfaction and better preparation of patients with initial breast cancer diagnosis if physicians’ communication lasted 30 minutes or more. Therefore the WAVES study clearly demonstrates the need for improved communication structures in terms of an appropriate time frame for breast cancer patients, which is not reflected in the current reimbursement structures.

Background The use of sedative drugs in specialist palliative care is common but presents challenges due to specific medical, ethical, and legal considerations. There is little to no assistance for administering adequate sedative drug doses, ensuring accurate documentation before and during sedation, or managing ethically and legally challenging situations. In 2021, the SedPall study group published recommendations on the use of sedative drugs in palliative care. The German Association for Palliative Medicine endorsed the dissemination of the recommendations nationwide. However, disseminating recommendations alone does not necessarily lead to changes in clinical practice. In the project “Development and piloting of a multi-modal intervention for the use of sedative drugs in specialist palliative care (iSedPall)”, we will develop a multi-modal intervention that implements these national recommendations into practical tools for healthcare professionals in specialist inpatient and home care settings. In the pilot study described below, we aim to test the feasibility of the multi-modal intervention, its appropriateness, and acceptability as primary feasibility outcomes of the multi-modal intervention. Additionally, we aim to assess the feasibility of measuring healthcare professionals´ confidence in using sedative drugs as an outcome indicator for a possible subsequent study. Methods and analysis We will use a mixed-methods approach to develop and pilot a multi-modal intervention. The primary feasibility outcomes and formative evaluation of the implementation process will be explored using quantitative (retrospective cohort study, survey) and qualitative elements (focus groups, interviews). Additionally, we will pilot the measurement of healthcare professionals´ confidence in using sedative drugs as an outcome indicator through a pre-post survey. Four specialist palliative care services will pilot the complex intervention for nine months. Due to the complexity of the intervention, we will follow the principles of the MRC framework for complex interventions and will apply a Theory of Change approach. The intervention will include different elements to be used throughout the patients’ treatment in inpatient and home specialist palliative care considering medical, ethical, and legal aspects for the use of sedative drugs and intentional sedation. The evaluation of the overall feasibility and the decision about proceeding to an implementation study will be based on the integration of quantitative and qualitative data, according to our mixed-methods approach. Discussion This project is the first attempt to translate national recommendations on best practices for sedative drug use into a multi-modal intervention and tests its feasibility. The study group identified potential risks and challenges related to the intervention´s feasibility, acceptability, and appropriateness in advance. To mitigate these risks, the study protocol is based on a theoretical framework, developed through a Theory of Change approach. Participatory elements and the involvement of different stakeholders are expected to enhance user acceptance and feasibility, potentially improving the development of supporting materials for sedative drug use in specialist palliative care while considering the interests of non-professionals. Trial registration Registered in the German Clinical Trials Register, DRKS-ID: DRKS00027241; Registered: 10/12/2021; https://www.drks.de/drks_web/setLocale_EN.do.

Background: Compassionate communities aim to empower people to deal with death, dying, and bereavement. They also intend to facilitate access to care and support at the end of life. However, there is a need for systematic knowledge on how to achieve the desired outcomes for citizens and for insights regarding the development, implementation, and evaluation. The aim of this study was to assess the views of members of a German Compassionate City, the “Caring Community Cologne” (CCC), and to report on its practical implementation. Methods: The CCC consists of a citywide Round Table, a Steering Group, a Coordination Office and four Working Groups in areas where activities are already in place. We conducted two qualitative focus groups with nine members of three Working Groups. The transcripts were analysed with qualitative content analysis, using MAXQDA version 2022, and results were transferred into the logic model “Throughput Model”. Results: At the time of evaluation, participants felt that the structures of the CCC were adequate, but criticised the cooperation and transparency between them. A key aspect of this was the requirement for a coordinating body. They stressed the support of federal institutions as a key factor, while at the same time describing insufficient citizen involvement. The transfer of the results into the Throughput Model highlighted four areas that the CCC should address: (I) neighbourhood networks need to be established to strengthen civic support; (II) people need to be made aware of the issues by making them accessible in their everyday lives; (III) the many existing support initiatives need to be better linked and made more accessible; (IV) adequate healthcare service structures have to be guaranteed. Conclusions: The top-down approach described, supported by the city’s engagement and involving existing initiatives can facilitate the development of a bottom-up civic engagement model in a large city. However, active citizen involvement appeared to be a challenge. The Throughput Model was a suitable basis for mapping work processes and developing evaluation plans. Keywords: Compassionate communities; public health palliative care; participatory action research; death literacy; Throughput Model