Benchmarking palliative care practices in neurooncology: a german perspective

Abstract

Purpose: To benchmark palliative care practices in neurooncology centers across Germany, evaluating the variability in palliative care integration, timing, and involvement in tumor board discussions. This study aims to identify gaps in care and contribute to the discourse on optimal palliative care strategies.

Methods: A survey targeting both German Cancer Society-certified and non-certified university neurooncology centers was conducted to explore palliative care frameworks and practices for neurooncological patients. The survey included questions on palliative care department availability, involvement in tumor boards, timing of palliative care integration, and use of standardized screening tools for assessing palliative burden and psycho-oncological distress.

Results: Of 57 centers contacted, 46 responded (81% response rate). Results indicate a dedicated palliative care department in 76.1% of centers, with palliative specialists participating in tumor board discussions at 34.8% of centers. Variability was noted in the initiation of palliative care, with early integration at the diagnosis stage in only 30.4% of centers. The survey highlighted a significant lack of standardized spiritual care assessments and minimal use of advanced care planning. Discrepancies were observed in the documentation and treatment of palliative care symptoms and social complaints, underscoring the need for comprehensive care approaches.

Conclusion: The study highlights a diverse landscape of palliative care provision within German neurooncology centers, underscoring the need for more standardized practices and early integration of palliative care. It suggests the necessity for standardized protocols and guidelines to enhance palliative care's quality and uniformity, ultimately improving patient-centered care in neurooncology.

Keywords: Neurooncology; Palliative care; Quality of life.

Fig. 1

Map displaying response rates from neurooncological centers by federal state. Most responses came from North Rhine-Westphalia and Bavaria. There were no responses from Hamburg and Brandenburg (each of which have only a single DKG-certified or university-hospital-based neurooncologist center). A darker shade of blue reflects that more responses were received from that federal state. State abbreviations (with response relative to total number of centers): B = Berlin (75%); BA = Bavaria (90%); BB = Brandenburg (0%); BR = Bremen (100%); BW = Baden-Wurttemberg (57%); H = Hesse (60%); HA = Hamburg (0%); LS = Lower Saxony (100%); MV = Mecklenburg-Vorpommern (100%); NW = North Rhine-Westphalia (100%); RP = Rhineland-Palatinate (100%); S = Saarland (100%); SA = Saxony-Anhalt (50%); SH = Schleswig–Holstein (50%); SN = Saxony (100%); TH = Thuringia (100%)

Fig. 2

In most neurooncological centers, the core team consisted of neurosurgeons, neurologists, oncologists, radiotherapists, neuropathologists and certified palliative care specialists. (bars indicate percentage of centers)

Fig. 3

This Venn diagram reflects the concept of “total pain” in neurooncology disease and the multidisciplinary approach taken by the surveyed neurooncological centers to address its various aspects. The diagram highlights that in the majority of neurooncological centers (represented by the overlapping region), a comprehensive team is available to address the different dimensions of total pain. 32 of the surveyed centers provide a fully comprehensive approach, with standardized palliative burden screening, neurologically focused psycho-oncologists and spiritual caregivers available on a regular basis, emphasizing the widespread implementation and significance of the multidisciplinary team in addressing total pain in neurooncological disease