Assessment of symptom burden and information needs helps tailoring palliative care consultations 115 management phase by characteristics, symptom burden, prioritised symptom(s), and information needs. For analyses using data from both the USD and the question prompt list, patients who had not used either were excluded. Associations between disease phase and topics included in the question prompt list that were <0.01 were regarded as statistically significant. RESULTS From December 2013 to October 2018, 1,485 patients were referred to the palliative care consultation team. Table 1 lists the characteristics of all 321 patients who filled in the conversation guide were included; 266 (83%) patients filled in both parts. The median age was 65 years (IQ-range, 57-72), 49% were male and most patients had cancer (96%). Median survival from consultation was 7 weeks (IQ-range: 2-26). Reported symptom burden and prioritised symptom(s) Patient-reported symptom burden is presented in Table 2. Patients reported the highest median burden for Fatigue, Loss of appetite, Dry mouth, and Constipation. Patients reported a median of six symptoms (IQ-range: 4-8) with clinically relevant burden, and a median of three symptoms (IQ-range 1-5) with serious burden, most often Fatigue, Loss of appetite and Dry mouth. Seventy per cent of the patients reported clinically relevant burden related to Well-being. Patients in the symptom-management phase versus disease-modifying phase reported higher burden for Loss of appetite (median=7 vs. 5, p=0.010) and lower burden for Anxiety (median=2 vs. 3, p=0.030; Table 3). Overall, patients most often prioritised Pain, Fatigue and Shortness of breath. Regardless of the particular symptom, the higher the patient-reported symptom burden, the more often patients indicated that the symptom in question should be prioritised. Information needs Table 4 lists the topics patients selected in the question prompt list. Patients selected a median of five out of six categories (range 1-6) and of 14 out of 75 items (range 1-38) to discuss. The category Symptoms/problems was selected most often and Social/meaning least often. The top five selected topics were Fatigue, Treatment options for future symptoms, Expected future symptoms, Pain and Home care. The five least selected topics were Sexuality and intimacy, Volunteers, Medication intake times, Meaning/philosophy of life and Next steps regarding medication. Patients in the symptom-management phase versus disease-modifying phase more often selected Hospice care and less often selected Sexuality and intimacy. 6
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