Characterisation of a Palliative Care Population in a Comprehensive Cancer Centre

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1 Characterisation of a Palliative Care Population in a Comprehensive Cancer Centre Kirstine Skov Benthien, Mie Nordly, Katja Videbæk, Lisbeth Grave Bendixen, Louise Christoffersen, Hans von der Maase, Geana Kurita, Helle Timm, Mette Kildevæld Simonsen, Christoffer Johansen and Per Sjøgren Department of Oncology Rigshospitalet, Copenhagen University and The Danish Knowledge Center for Palliative Care Corresponding author: Funded by The Danish Cancer Society and Trygfonden

2 Background Two systematic reviews identified challenges with the samples for research in palliative care: 1. Lack of agreement of the definition of Palliative Care Patients 2. Lack of clarity in the previous definitions (Van Mechelen et al., Palliat Med 2012) (Sigurdardottir et al., JPSM 2013) Any selection of Palliative Care Populations is arbitrary, but nevertheless a necessity for research and helpful for healthcare planning.

3 Aims and Methods Aims 1. To characterize a population of patients with incurable cancer and limited treatment options 2. To investigate possible selections of patients, who may benefit from palliative care 3. To investigate factors associated with contact to specialist palliative care (SPC). Methods The sample is comprised of patients assessed for inclusion in DOMUS An RCT about SPC at Home for Cancer Patients. Period: June to December 2013 Setting: Copenhagen University Hospital Variables: Incurability of disease, ECOG performance status, cancer diagnosis, comorbidity, oncology treatment and sociodemographics Statistics: Wilcoxon rank test and multivariate logistic regression

4 Incurable cancer disease and limited treatment options Diagnosis Breast cancer Lung cancer Gastrointestinal cancers Ovarian cancer / Uterine cancer Cervical cancer / Vulva cancer CNS tumours Prostate cancer / Bladder cancer / Penile cancer / Thyme cancer / Adrenal carcinomas Cancer of unknown primary origin Head and neck cancers Limited treatment options Refractory to 3rd line treatment for metastatic disease Refractory to 2nd line treatment for metastatic/advanced disease Refractory to concomitant /adjuvant chemotherapy Refractory to radiotherapy or surgery with curative intent

5 Screening Inpatients: Daily screening of all inpatients Outpatients: Sequential alternation screening procedure Breast Monday Head and neck Lung Friday Tuesday Uro. GI Thursday Wednesday Gyn.

6 Results Possible selections of palliative care patients in a sample of 3717 cancer patients: Oncology population (100%) Patients with cancer N = 3717 Palliative Care Population (13.8%) Essential Palliative Care Population (6.9%) Incurable disease and limited treatment options N = 513 Performance Status 2-4 N = 256

7 Table 1: Characteristics of the palliative care populations Characteristics Palliative Care Population Essential Total PS 0-1 PS 2-4 p-value N (%) 513 (100) 257 (100) 256 (100) Female (%) 290 (56.5) 144 (56) 146 (57) Mean age (SD) 65.2 (11.85) 63 (12.73) 67.4 (10.46) <.0001 Inpatient (%) 102 (19.88) 21 (8.17) 81 (31.64) <.0001 Living situation (%) Living with adults In institution 6 (1.17) 2 (0.78) 4 (1.56) With other adults 10 (1.95) 4 (1.56) 6 (2.34) With spouse/partner 257 (50.10) 129 (50.19) 128 (50) With spouse/partner and 43 (8.38) 34 (13.23) 9 (3.52) children Not living with adults ns With children 5 (0.97) 2 (0.78) 3 (1.17) Alone 192 (37.43) 86 (33.46) 106 (41.41) Cancer site (%) ns CNS 70 (13.65) 43 (16.73) 27 (10.55) Breast 74 (14.42) 41 (15.96) 33(12.89) Female genitalia 48 (9.36) 25 (9.73) 23 (8.98) Gastrointestinal 107 (20.86) 58 (22.57) 49 (19.14) Head and neck 20 (3.90) 10 (3.89) 10 (3.91) Lung 148 (28.85) 53 (20.62) 95 (37.11) Male genitalia 14 (2.73) 8 (3.11) 6 (2.34) Mesothelioma/ connective 10 (1.95) 7 (2.72) 3 (1.17) tissue Unknown origin 6 (1.17) 2 (0.78) 4 (1.56) Urinary system 16 (3.12) 10 (3.89) 6 (2.34) Distant metastasis 405 (78.95) 192 (74.7) 213 (83.2) ns Specialist Palliative Care (%) 147 (28.65) 50 (19.46) 97 (37.89) Terminal declaration (%) 149 (29.04) 57 (22.18) 92 (35.94) Characteristics Palliative Care Population Essential Total PS 0-1 PS 2-4 p-value Comorbidity (%) Dementia 6 (1.17) 3 (1.17) 3 (1.17) Chronic pulmonary disease 66 (12.87) 17 (6.61) 49 (19.14) Connective tissue disease 17 (3.31) 8 (3.11) 9 (3.52) Peripheral vascular disease 25 (4.87) 14 (5.45) 11 (4.30) Moderate to severe renal disease 10 (1.95) 4 (1.56) 6 (2.34) Hemiplegia 1 (0.19) 1 (0.39) 0 Congestive heart failure 16 (3.12) 7 (2.72) 9 (3.52) Mild liver disease 6 (1.17) 1 (0.39) 5 (1.95) Cerebrovascular disease 14 (2.73) 2 (0.78) 12 (4.69) Myocardial infarction 12 (2.34) 5 (1.95) 7 (2.73) Lymphoma 2 (0.39) 1 (0.39) 1 (0.39) Diabetes Mellitus with complications 5 (0.97) 1 (0.39) 4 (1.56) Ulcer disease 2 (0.39) 0 2 (0.78) Mean Charlson score (SD) 0.47 (0.83) 0.36 (0.66) 0.57 (0.96) Psychiatric comorbidity* (%) 48 (9.36) 18 (7.00) 30 (11.72) ns Oncology treatment (%) Active antineoplastic treatment Chemotherapy 293 (57.12) 175 (68.09) 118 (46.09) Chemo/radiotherapy 7 (1.36) 1 (0.39) 6 (2.34) Hormonal therapy 10 (1.95) 7 (2.72) 3 (1.17) Radiotherapy 44 (7.80) 10 (3.89) 30 (11.72) Surgery 3 (0.58) 3 (1.17) 0 Other 2 (0.39) 1 (0.39) 1 (0.39) No active antineoplastic treatment Pause 114 (22.22) 54 ( 21.01) 60 (23.44) Supportive treatment 44 (8.58) 6 (2.33) 38 (14.84)

8 Table 2: Characteristics of the SPC Population Characteristics Palliative Care Population No SPC SPC p-value N (%) 366 (100) 147 (100) Female (%) 184 (50.3) 106 (72.11) Mean age (SD) 64.7 ns 65.4 (11.83) (11.92) Inpatient (%) 69 (18.85) 33 (22.45) ns Living situation (%) Living with adults In institution 5 (1.37) 1 (0.68) With other adults 5 (1.37) 5 (3.4) With spouse/partner 198 (54.1) 59 (40.14) With spouse/partner and 33 (9.02) 10 (6.8) children Not living with adults With children 2 ( (2.04) Alone 123 (33.61) 69 (46.94) Cancer site (%) CNS 64 (17.49) 6 (4.08) Breast 34 (9.29) 40 (27.21) Female genitalia 42 (11.48) 6 (4.08) Gastrointestinal 77 (21.04) 30 (20.41) Head and neck 15 (4.1) 5 (3.4) Lung 101 (27.6) 47 (31.97) Male genitalia 12 (3.28) 2 (1.36) Mesothelioma/ 9 (2.46) 1 (0.68) connective tissue Unknown origin 2 (0.55) 4 (2.72) Urinary system 10 (2.73) 6 (4.08) Distant metastasis 270 (73.77) 135 (91.84) ns Performance Status 2-4 (%) 159 (43.44) 97 (65.99) Terminal declaration (%) 60 (16.39) 89 (60.54) <.0001 Characteristics Palliative Care Population No SPC SPC p-value Comorbidity (%) Dementia 5 (1.37) 1 (0.68) Diabetes mellitus without complications 32 (8.74) 8 (5.44) Chronic pulmonary disease 49 (13.39) 17 (11.56) Connective tissue disease 11 (3.01) 6 (4.08) Peripheral vascular disease 19 (5.19) 6 (4.08) Moderate to severe renal disease 5 (1.37) 5 (3.40) Hemiplegia 1 (0.27) 0 Congestive heart failure 15 (4.10) 1 (0.68) Mild liver disease 3 (0.82) 3 (2.04) Cerebrovascular disease 10 (2.73) 4 (2.72) Myocardial infarction 11 (3.01) 1 (0.68) Lymphoma 1 (0.27) 1 (0.68) Diabetes Mellitus with complications 3 (0.82) 2 (1.36) Ulcer disease 2 (0.55) 0 Mean Charlson score (SD) 0.48 (0.81) 0.42 (0.86) ns Psychiatric comorbidity* (%) 35 (9.56) 13 (8.84) ns Oncology treatment (%) Active antineoplastic treatment Chemotherapy 219 (59.84) 74 (50.34) Chemo/radiotherapy 4 (1.09) 3 (2.04) Hormonal therapy 10 (2.73) 0 Radiotherapy 28 (7.65) 12 (8.16) Surgery 3 (0.82) 0 Other 1 (0.27) 1 (0.68) No active antineoplastic treatment Pause 75 (20.49) 39 (26.53) Supportive treatment 26 (7.10) 18 (12.24)

9 Perspectives Concept development Healthcare planning organisational level Healthcare planning individual patient level

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