Mary Joanne Verhoef

Chapter 6 120 Table 5. Relationship between symptom burden and information needs of patients in the palliative phase (n=266) Utrecht Symptom Diary item Symptom burden <4 Symptom burden ≥4† Symptom burden ≥7† Prioritised symptom‡ Total <4 n Information needs n (% of 266) Total ≥4 n Information needs n (% of 266) Total ≥7 n Information needs n (% of 266) Total prioritised n Information needs n (%) Pain 116 39 (33.6) 139 109 (78.4) 55 45 (81.5) 70 61 (87.1) Dry mouth 100 4 (4.0) 156 71 (45.5) 88 52 (59.0) 10 10 (100) Loss of appetite 74 25 (33.8) 173 113 (65.3) 115 78 (67.8) 14 14 (100) Constipation 91 11 (12.1) 155 51 (32.9) 75 36 (48.0) 10 7 (70.0) Nausea 194 24 (12.4) 65 40 (61.5) 30 23 (76.7) 18 16 (88.9) Shortness of breath 169 17 (10.1) 87 51 (58.6) 36 27 (75.0) 87 51 (58.6) Fatigue 57 25 (43.9) 201 149 (74.1) 129 103 (79.8) 23 22 (95.7) Anxiety 156 21 (13.5) 99 68 (68.7) 56 44 (78.6) 17 17 (100) Depression 134 18 (13.4) 114 64 (56.1) 56 41 (73.2) 12 12 (100) This table depicts the proportion of patients having information needs about the symptom with a score of <4; ≥4 or ≥7 respectively, and symptoms the patient prioritised. Total patients included 266; 45 patients were excluded because they did not fill out the question prompt list. Not all patients completed the assessment scales for all symptoms. Symptoms are in the same order as in the Utrecht Symptom Diary and are scored on a scale from 0 to 10. “Sleeping problems”, “Swallowing problems” and “General wellbeing” are part of the Utrecht Symptom Diary, but do not have a corresponding item in the question prompt list and are therefore not part of this table. † Symptom burden and prioritised symptoms were statistically significantly associated with more information needs. P-values of <0.05 were considered statistically significant. Symptom burden ≥4 also includes the patients who reported symptom burden ≥7. ‡ 177 patients (66.5%) reported symptoms they wanted to prioritise and had used the question prompt list; there was room to report more than one symptom. For purposes of analysis, the first four prioritised symptoms were included in this analysis.

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