P08.03.A Conversation tool for brain tumor patients - tailor-made support and guidance for the patient and their proxies

Abstract

Abstract Background An evaluation by the Dutch Neuro-Oncology Society (LWNO) showed that screening for psychosocial problems and the need for psychosocial care in glioma patients and their proxies is currently not optimal. Although tools to screen for psychosocial issues such as the Distress Thermometer exist, in daily practice they appear to be insufficient to discuss all disease-specific problems patients with brain tumors may encounter. We describe the development of a conversation tool to support the consultation between the patient with a brain tumor, their proxies and the health care professionals (HCPs). Material and Methods The development of the conversation tool for brain tumors was based on the tool used by the AYA Care Network in the Netherlands. Topics of importance for the entire care process were identified in a brainstorming session with 15 people (comprising HCPs, patients and proxies). Subsequently, the content of the conversation tool was determined by members of the LWNO and members of the LWNO-working group of nurses specialized in neuro-oncology (LWNO-v). Each topic in the conversation tool is supported by a visual, which was developed by a graphic design company in close collaboration with patients, proxies and HCPs. Results The conversation tool contains a total of 35 different topics covering six domains: physical health, daily life activities, psychological health, social relationships, loss of health and life, practical issues, all illustrated by a visual. The conversation tool can be given to the patient in booklet form before an appointment with the HCP, so they can prepare the conversation upfront. In addition, cards per domain will be available in the consultation room to be used during the appointment. Conclusion: By using the conversation tool, optimal individual guidance and support of patients with brain tumors is facilitated, as this patient population has unique issues that are often not covered by exiting tools. Using the conversation tool also promotes a nationally uniform way of working. Currently, an interactive tool for HCPs is being developed in which an overview of available interventions and best practices for the topics in the conversation tool are described, to ensure the needs of patients can be adequately addressed. The process of development of this tool can serve as an example for other cancer types.