Development of a patient assessment to meet the needs of patients suffering from advanced non-oncological diseases - the KOPAL trial.

Abstract

Background: Patients suffering from progressive non-oncologic chronic diseases are primarily treated in primary care. Early integration of palliative care (PC) can improve patients' quality of life and reduce burdensome physical symptoms. To guide interprofessional counselling between GPs and specialist palliative home care teams, we developed an aide memoire for patients diagnosed with advanced non-oncological chronic diseases, the KOPAL conversation guide, as part of the KOPAL trial. The aim of this study was to ensure the conversation guide covers all relevant care aspects in order to reveal individual gaps and needs in healthcare.

Methods: We conducted three focus groups including four patients, seven health care providers, and five stakeholders. During each group, a draft of the conversation guide was discussed, revised, and consented from the respective perspectives.

Results: The final KOPAL conversation guide contains eight key topics: living with the illness, physical, emotional, personal, and social situation, information and communication, control and autonomy, emergency management. Each topic refers to a number of related subtopics listed in each respective thematic section. The conversation should start with the introductory question referring to the patient's current well-being. At the end, patients are asked to state their primary concern based on the conversation.

Conclusions: The KOPAL conversation guide is a broad evaluation and communication tool. It covers potential PC needs of non-oncological patients and provides a basis for interprofessional case planning, and counselling. Applying the guide may help to bridge gaps in communication between general and specialist PC professionals as well as between professionals and patients.