Assessment of symptom burden and information needs helps tailoring palliative care consultations 111 INTRODUCTION Effective communication between patients, their families and clinicians during the palliative phase of disease is essential to adequately assess and meet physical, psychosocial and spiritual needs, and to set goals of care.1 However, patients, their family, and clinicians often consider addressing such topics to be difficult.2 Patients and family often do not know what palliative care entails, what they might need or what to discuss during palliative care consultations.3, 4 Most patients underreport their symptoms.5, 6 They often appreciate receiving information about symptoms, prognosis, and about practical, psychosocial, or spiritual issues. These information needs may change over time.4, 7-9 Clinicians often feel unprepared to discuss end-of-life matters or do not know which topics to address.2, 10, 11 Research has shown that clinicians tend to underestimate and under-document the severity of symptoms compared to what patients report themselves.12-14 Core elements of palliative care consultations are a comprehensive assessment of needs of patients and family, and informing them about (future) symptoms and social, psychological, and existential dimensions of their palliative disease phase. However, palliative care consultations may take up time and patient-reported burden and information needs may change during the disease trajectory, requiring regular assessments. Insight into patient-reported symptom burden and information needs may inform clinicians about how they can tailor palliative care consultations to the needs of patients and family. Patients can report symptom burden and wellbeing by completing patient-reported outcome measures (PROMs). It is known that individual patients can score symptom burden differently because they experience their problems in many ways, and because symptoms may also have social, psychological or existential aspects.15, 16 Before initiating symptom management, scores should therefore always be discussed with patients following a multidimensional approach.17 Another tool that supports palliative care consultations is a question prompt list, i.e., a structured list of sample questions that can help patients and family formulate questions for their consultation.18 The primary objective of this study was to determine whether patient-reported symptom burden and prioritised symptoms are related to patients’ information needs, using a PROM and a question prompt list. The second objective was to study whether there are any differences in patient-reported symptom burden and information needs between the disease-modifying phase versus symptom-management phase. 6
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