Mary Joanne Verhoef

End-of-life trajectories of patients with haematological malignancies and advanced solid tumours 75 for interrater agreement. EPRs were searched for any correspondence with general practitioners (GPs) or PCCT-consultations during the three months before the ED-visit and proactive symptom-management plans in files or letters up to six weeks before the ED-visit. Limitations on life-sustaining treatments (LSTs) were orders on no resuscitation; no ventilation; and no admission to the intensive care unit (ICU). LST-discussions did not occur routinely and notes about LSTs were collected by the research assistants. Arrival at the hospital within office hours was defined as from Monday to Friday between 8 am and 6 pm. Performance status was scored using the Eastern Cooperative Oncology Group (ECOG)-scale.28 The main symptom was defined as the referring symptom reported by the attending physician and is part of the structure of reporting in the EPR. This symptom was considered ‘new’ if it was not mentioned in the EPR three months before the ED-visit; it was considered ‘acute’ if the onset of the symptom was <24h. The clinical diagnosis was defined as the conclusion reported by the attending physician in the EPR. Date and place of death were obtained from EPRs. Cause of death in HM-patients was discussed between one expert of the PCCT (EN) and a haematologist (CO) until agreement was reached. Cues for proactive care were communication about the patient ’s condition between a health care professional or PCCT of the hospital and the patient ’s general practitioner (GP) via a letter, telephone, or transfer; proactive care plans (care plan for anticipation of symptoms; care plans informing the general practitioner, care plans written by the PCCT; PCCT-referrals); and limitations on LSTs before the current ED-visit. Quality of endof-life care was assessed using indicators for proactive end-of-life care and indicators of Earle et al.: intensive anti-cancer treatment in the previous 3 months before the EDvisit (intensive anti-cancer treatments include chemotherapy, targeted therapy, stem cell transplantation and surgery); the number of ED-visits in the 6 months before the current ED-visit; in-hospital death; death in an acute hospital department (the ED or the ICU); death in a hospice (as a positive measure).24 Statistics Characteristics of patients, referrals, ED-visits, and follow-up were analysed using descriptive statistics. To test differences between HM- and ST-patients, we performed Chi-square tests for nominal variables; Mann-Whitney U tests for not-normally distributed continuous or ordinal variables; and Fisher-Freeman-Halton tests for variables with three or more categories. Kaplan-Meier’s methodology was used to estimate survival from the ED-visit and survival between HM-patients and ST-patients was tested using a log-rank test. Complete case analyses were performed, using SPSS 23.0 software and a two-sided p-value <0.05 was considered statistically significant. 4

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