Background: A major goal of palliative care is sustaining quality of life (QoL) for patients suffering from severe symptoms, which is determined by physical and psychological consequences of an illness as well as other factors, such as the meaning of life and family support. Patients have reported high levels of QoL despite worsening symptoms. The self-estimated QoL of patients receiving outpatient and inpatient palliative care was analyzed using retrospective data from the German Hospice and Palliative Care Evaluation (HOPE).
Materials and methods: A descriptive analysis of questionnaires given to 2,030 patients (1,616 inpatients, 414 outpatients) and their professional care takers was carried out assessing symptoms, well-being and care-related information.
Results: At the beginning of treatment inpatients had a higher symptom burden than outpatients. Reduced pain, tiredness and weakness and improved well-being allowed inpatients to be discharged. Outpatients suffering from severe dyspnea, constipation and anxiety were more likely to be admitted to hospital. Well-being was associated with symptom burden, weakness and tiredness in both self-evaluation and care-taker assessment particularly for outpatients.
Conclusions: While tiredness and weakness influenced QoL especially for outpatients, patient-specific factors may surpass them in patient perception. To improve the QoL of palliative care patients, individual factors must be assessed in addition to symptom control.