Mary Joanne Verhoef

Chapter 6 116 Table 1. Characteristics of 321 patients who filled out the Utrecht Symptom Diary in the Leiden Guide on Palliative Care. Patient characteristics Total population Diseasemodifying phase Symptommanagement phase n (% of 321) n (% of 140) n (% of 181) P-value Male gender 158 (49.2) 63 (45.0) 95 (52.5) 0.18 Age in years, median (IQ-range) 65 (57-72) 63 (52-70) 68 (60-73) <0.0001 Diagnosis Cancer (per anatomic region) 307 (95.6) 136 (97.1) 171 (94.5) 0.24 Gastro-intestinal 100 (31.2) 39 (78.1) 61 (33.7) Gynaecological 42 (13.1) 18 (12.9) 24 (13.3) Respiratory 41 (12.8) 20 (14.3) 21 (11.6) Soft tissue 31 (9.7) 15 (10.7) 16 (8.8) Urological 22 (6.9) 8 (5.7) 14 (7.7) Head-neck 19 (5.9) 6 (4.3) 13 (7.2) Melanoma 17 (5.3) 13 (9.3) 4 (2.2) Haematological 13 (4.0) 6 (4.3) 7 (3.9) Breast 11 (3.4) 5 (3.6) 6 (3.3) Unknown primary 3 (0.9) 1 (0.7) 2 (1.1) Neurological 2 (0.6) 2 (1.4) 0 (0.0) Other 6 (1.9) 3 (2.1) 3 (1.7) Non-cancer 14 (4.4) 4 (2.9) 10 (5.5) 0.24 End-stage renal failure 4 (1.2) 2 (1.4) 2 (1.1) Pulmonal failure† 4 (1.2) 2 (1.4) 2 (1.1) Neurological deterioration‡ 3 (0.9) 0 (0.0) 3 (1.7) Cardiovascular§ 1 (0.3) 0 (0.0) 1 (0.5) Other¶ 1 (0.3) 0 (0.0) 1 (0.5) Survival in weeks, median (IQrange) 7 (2-26) 12 (5-54) 5.0 (-13) <0.0001 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 † Diagnoses: chronic obstructive pulmonary disease; lung fibrosis; combined restrictive/obstructive pulmonary disease due to bronchiectasis; interstitial lung disease ‡ Diagnoses: amyotrophic lateral sclerosis; Parkinson’s disease; post-anoxic encephalopathy § Diagnoses: right-sided heart failure; aortic dissection ¶ Diagnosis: persistent ileus of the small intestine List of abbreviations: IQ-range: interquartile range

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