The Impact of Advanced Home Care on Health-related Quality of Life Reports in the end of life from palliative care patients with cancer

Sammanfattning: ABSTRACT The aim of the present work was to compare patients with advanced cancer receiving specialized palliative home care with those receiving conventional care. A hospital-based advanced home care programme was initiated, in order to enable patients to remain at home for a longer period and to choose to die at home. The allocation to advanced home care (AHC) or conventional care (CC) was performed according to the patients’ preferences. This intervention offered an opportunity to investigate the effect of AHC and to describe the HRQL of patients with a progressive, life-threatening disease. A prospective longitudinal comparative study was performed. The two groups of patients (AHC and CC) were compared and the main outcome variables were place of death, time spent in institution or at home, and the patients’ HRQL. The latter was assessed monthly by using self-reported questionnaires, including the European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), the Impact of Event Scale (IES), five questions about social support and two items concerning general well-being. The AHC patients spent more time outside the hospital and more died at home compared with patients in the CC group. Compared with the CC patients, patients who chose the AHC programme had lived longer with their cancer diagnosis, had a shorter survival period after study enrolment, and had poorer performance status. A marked, but gradual deterioration was seen during the patients’ last three months of life. A more rapid increase in problems was observed between two and one month before death regarding Physical, Cognitive and Social function, as well as Fatigue. The mean scores for Pain, Nausea/Vomiting, Sleeping problems, Diarrhoea and Financial impact were stable over time. Patients who dropped out of the study after filling in the first questionnaire after inclusion had a less favourable prognosis, with regard to both clinical variables and HRQL data. This pattern was not found from patients dropping out of the study during the last two months before death. The palliative intervention with AHC proved successful. Dying at home is strongly associated with the patients’ preference to do so. The results indicate that patients are reluctant to accept home care until necessary due to the severity of functioning impairments and symptom burden. It is important to be aware of the high level of symptoms in the patients’ last three months of life. Symptom assessment using standardised questionnaires may enhance the focus on symptom management. Results from HRQL studies must be interpreted with care due to non-random attrition. This is less evident close to death.