Family reports of dying patients' distress: the adaptation of a research tool to assess global symptom distress in the last week of life

Abstract

Understanding dying patients' symptom distress is an important component of efforts to improve care at the end of life. It can, however, be problematic to conduct research with dying patients. Family members can serve as sources of information about decedents' last days of life. In order to assess family reports of decedents' global symptom distress in the last week of life, we adapted the Memorial Symptom Assessment Scale Global Distress Index (MSAS-GDI), a brief measure of patient global symptom distress, for use in a retrospective study of family reports about end-of-life care. It was administered to a sample of 103 family members to assess the psychometric properties of the instrument in bereaved family members. The Family MSAS-GDI consists of questions about 11 psychological and physical symptoms commonly experienced by dying patients. The majority of family members were able to respond to the scale items. The mean Family MSAS-GDI score was 1.14 (SD = 0.87) with a range of 0 to 3.73. The scale demonstrated good internal consistency (alpha = 0.82). The average item-total correlation was r = 0.49 and the average inter-item correlation was r= 0.30, suggesting items were moderately correlated with the overall total scale and with each other. The Family MSAS-GDI could prove to be a useful tool in assessing and tracking global symptom distress in dying patients.