Assessment of symptom burden and information needs helps tailoring palliative care consultations 119 Table 4. (continued) Total population Diseasemodifying phase Symptommanagement phase Category 6: Last phase of life 197 74.1 69.5 77.7 0.13 Palliative sedation 147 55.3 54.2 56.1 0.76 Euthanasia 147 55.3 55.1 55.4 0.96 Foods and fluids 82 30.8 28.8 32.4 0.53 Practical matters relating to the end of life 149 56.0 50.8 60.1 0.13 Course of last phase of life 114 42.9 40.7 44.6 0.52 This table shows how often patients selected the topics for discussion with the help of a question prompt list. The categories and topics are ordered similar to the question prompt list. See Supplement 2 for the code book that was used to group topics and questions of the question prompt list. Disease-modifying phase and symptommanagement phase are classified using Lynn and Adamson’s definitions: disease-modifying phase, which focusses on disease treatment for life-prolongation and symptom management; symptom-management phase, in which treatment is aimed at symptom relief or terminal care.22 † This p-value represents the statistical differences in information needs between disease-modifying phase versus symptom-management phase. P-values of <0.01 were considered statistically significant. Relationship between symptom burden and prioritised symptom(s) with information needs Patients had more information needs regarding symptoms they reported as conferring a serious or clinically relevant burden or had prioritised (Table 5). Pain and Fatigue were symptoms on which patients scored ≥4 and most often wanted information about. Mild symptoms (score <4) about which patients most frequently wanted information were Fatigue and Loss of appetite. DISCUSSION This study aimed to describe the relationship between patients’ symptom burden and information needs and to assess the relationship between those. Patients wanted information about the symptoms for which they reported clinically relevant burden but also about symptoms for which they reported mild burden. In general, patients had information needs about a wide range of topics; these mostly concerned current and future symptoms and symptom management. The need for information about sexuality and intimacy came last on the list of patients and families, especially when the disease was in the symptom-management phase. In that phase, patients often needed information about hospice care. Symptom burden and prioritised symptom(s) Patients in our study reported the highest symptom burden for Fatigue and Loss of appetite, which corresponds with the findings in a study on patients with advanced cancer 6
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