Assessment of patient symptom burden and information needs helps tailoring palliative care consultations: An observational study

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 information‐provision includes inviting patients to also discuss topics they did not consider themselves.