Mary Joanne Verhoef

Assessment of symptom burden and information needs helps tailoring palliative care consultations 117 Table 2. Patients-reported symptom burden assessed with the Utrecht Symptom Diary (n=321). Utrecht Symptom Diary item Score Score ≥4† Score ≥7† Priority‡ Median (IQ-range) n (% of 321) n (% of 321) n (% of 321) Pain 4 (1-6) 159 (49.5) 65 (20.2) 82 (25.5) Sleeping problems 4 (1-7) 165 (51.4) 95 (29.6) 15 (4.7) Dry mouth 5 (2-8) 198 (61.7) 113 (35.2) 12 (3.7) Swallowing problems 1 (0-4) 90 (28.0) 49 (15.3) 9 (2.8) Loss of appetite 6 (3-9) 209 (65.1) 139 (43.3) 15 (4.7) Constipation 5 (2-7) 182 (56.7) 90 (28.0) 12 (3.7) Nausea 0 (0-3) 73 (22.7) 35 (10.9) 21 (6.5) Shortness of breath 1 (0-5) 110 (34.3) 48 (15.0) 28 (8.7) Fatigue 7 (4-8) 242 (75.4) 157 (48.9) 29 (9.0) Anxiety 2 (0-5) 115 (35.8) 62 (19.3) 17 (5.3) Depression 3 (0-6) 133 (41.4) 63 (19.6) 12 (3.7) Well-being§ 5 (4-7) 224 (69.8) 88 (27.4) 0 † Patient-reported symptom burden scores of ≥4 are considered as clinically relevant burden; ≥7 as serious burden. In this table, both percentages are reported per symptom. Totals of rows may therefore exceed 100%. Results of scores <4 are not presented in this table. ‡ 106 patients did not indicate which symptom they want to be solved first. Patients could fill in more than one symptom; for purposes of analysis, the first four symptoms reported as priority were included in the analyses. Symptoms are in the same order as in the Utrecht Symptom Diary and are scored on a scale from 0 to 10. § A higher score indicates poorer well-being; “Well-being” is never prioritised by any patient. List of abbreviations: IQ-range: interquartile range Table 3. Differences in patient-reported symptom burden in 140 patients in the disease-modifying phase versus 181 patients in the symptom-management phase. Utrecht Symptom Diary item Disease-modifying phase (n=140) Symptom-management phase (n=181) Median (IQ-range) Median (IQ-range) P-value Pain 3 (1-6) 4 (2-6) 0.13 Sleeping problems 4 (1-6) 5 (1-7) 0.15 Dry mouth 5 (1-7) 5 (2-8) 0.12 Swallowing problems 1 (0-3) 1 (0-5) 0.47 Loss of appetite 5 (1-8) 7 (4-9) 0.010 Constipation 5 (1-7) 5 (3-7) 0.24 Nausea 0 (0-4) 1 (0-3) 0.13 Shortness of breath 1 (0-4) 2 (0-5) 0.07 Fatigue 6 (4-8) 7 (4-9) 0.12 Anxiety 3 (0-6) 2 (2-5) 0.030 Depression 3 (1-6) 2 (0-6) 0.70 Well-being† 5 (3-7) 5 (4-7) 0.50 Disease-modifying phase and symptom-management 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 Symptoms are in the same order as in the Utrecht Symptom Diary and are scored on a scale from 0 to 10. List of abbreviations: IQ-range: interquartile range † A higher score indicates poorer well-being; “Well-being” is never prioritised by any patient. 6

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