Chapter 6 110 ABSTRACT Objective The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. Methods Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0–10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. Results Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57–72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1–38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. Conclusion Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored informationprovision includes inviting patients to also discuss topics they did not consider themselves.
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