State of development of regional hospice and palliative care networks in Germany and a descriptive comparison of the role of coordination: results of an online survey using a maturity model

Abstract

Abstract Background Regional hospice and palliative care networks (RHPCNs) aim to establish frameworks for care-management level collaboration between end-of-life care providers within specific regions. Since 2022, political support for RHPCNs in Germany has been bolstered by a new funding guideline for network coordination under § 39d SGB V. However, despite this political backing, limited data exist on the development of these networks. The present study, conducted within the framework of the HOPAN project, aimed to systematically assess the maturity of RHPCNs in Germany and offer first insights in differences in observed maturity levels, further depending on coordination. Methods A maturity model comprising six dimensions (moderation, infrastructure, public relations and information exchange, establishment and development, training and educational programs, development of regional care services and practices), further divided into n = 28 subdimensions developed de novo for the RHPCN context was applied as a self-assessment instrument. An online survey was conducted between November 2023 and January 2024. Invitations were sent via e-mail to N = 390 contacts involved in RHPCNs and disseminated through newsletters of two professional associations. Data were descriptively analyzed using SPSS. Results A total of n = 70 complete datasets were collected, n = 64 being included in the final analysis. The analyzed RHPCNs were established between 2001 and 2024. The “Financing” subdimension received the least mature self-assessments, with 46.7% of participating RHPCNs ( n = 28) self-classifying at the lowest level. The “Structure of network meetings” subdimension demonstrated the highest level of maturity, with 42.6% of RHPCNs ( n = 26) self-classifying full maturity. A comparative overview of maturity based on coordination type revealed that RHPCNs with paid coordination tended to exhibit more structured organization, systematic communication and funding, and comprehensive planning; moreover, also volunteer coordinators and coordination by network members demonstrated greater maturity than RHPCNs with no coordination at all. Conclusion While many RHPCNs have well-structured coordination practices and effective meeting formats, significant challenges remain concerning the procurement of stable and systematic funding and project management. These insights suggest a need for targeted strategies to improve infrastructure and support the establishment of effective coordination roles to encourage the further development and sustainability of RHPCNs. Trial registration The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien Registration N° DRKS00030629 date of registration November 2, 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization under the same registration number. Ethical approval was granted by the Ethics Committee of Hannover Medical School on July 20, 2022 (N° 10424_BO_S_2022). Participants provided informed consent on the first page of the survey, agreeing to the processing of their data in accordance with the ethics committee approval. Participation was contingent on this consent.