Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care

Palliative patients and their family caregivers were interviewed at the beginning of home care in personal interviews at home in regard to their psychological distress as well as their quality of life. Quality of life was collected with the palliative module EORTC QLQ-C15-PAL (patients) and the Short Form-8 Health Survey (caregivers). The psychological distress was assessed using the Hospital Anxiety and Depression Scale, the extent of social support with the Oslo 3-items social support scale. Two multiple regression models were employed to examine factors associated with psychological distress. Data from 106 palliative patients (39.6 % female) and their family caregivers (67.9 % female) were included in the analysis. Every fourth patient had clinically relevant anxiety levels and half of the palliative patients had clinically symptomatic depression scores. The main symptoms of the patients were: fatigue, loss of appetite, pain, and shortness of breath. Patients' and caregivers' anxiety and depression scores were significantly correlated (anxiety r = 0.386, depression r = 0.416). Thirty-three percent of caregivers suffered from high anxiety and 28 % from depression. Spousal caregivers had higher psychological distress than other caregivers. Other relevant factors for higher distress were high financial burden and low social support. There was hardly any family member receiving professional psychological support. In palliative patients, depressive symptoms should not be judged as a normal attendant of the terminal illness situation. Instead, patients should be referred to appropriate support services for pharmacological or psychological treatment. Spousal caregivers and caregivers who are socially not well integrated are in particular need of support. Attention to the financial burden of family caregivers is also very important. Due to the existing correlation between the psychological situation of palliative patients and their caring relatives, couples must be considered an emotional system rather than just two individuals.