Subjective Definitions of Problems and Symptoms in Palliative Care

Abstract

Background: Data from the core data set of the Hospice and Palliative Care Evaluation (HOPE) from 1999 to 2001 demonstrated considerable variance in the incidence of patients' symptoms and problems between participating services. This paper aims to investigate these differences more closely. Methods: During the evaluation period of HOPE in 2002 a telephone survey with a representative of each participating unit was performed. Telephone interviews assessed the professionals' definitions of selected symptoms and estimates of problem and symptom incidences. Content analysis was used to evaluate qualitative answers. Results: Staff members rated pain, weakness, nausea/emesis as the most frequent physical symptoms; anxiety, depression and amentia as most frequent psychological symptoms; wound treatment, mobilisation and weakness as nursing problems and organisation of care settings, loneliness, demands of relatives the most common social needs. Staff members used a wide range of definitions for cachexia, weakness and depression. Discussion: Standard definitions of symptoms and problems were lacking in the articulation of subjective staff members' perspectives. Meaningful evaluation of multicentre surveys would require training in symptom assessment and classification in order to produce a common basis for documentation. Even though definitions differed widely, underlying concepts seemed to be compatible.

Assessment of Quality of Life in Patients Receiving Palliative Care: Comparison of Measurement Tools and Single Item on Subjective Well-Being

“…MIDOS is similar to the Edmonton Symptom Assessment Scale (ESAS) and, indeed, has been described as the German version of the ESAS. 20 In addition, this item is well familiar to German palliative care patients, and they are used to answering this question (''How do you feel today?'') as it often is part of the physician's clinical routine.…”