How much psychological distress is experienced at home by patients with palliative care needs in Germany? A...

The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service.

Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected.

A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0-40 = 34%, 50-70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were "fatigue" (90%), "getting around" (84%), "eating" (63%), "bathing/dressing" (60%), and "sleep" (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it "relieving."

A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.