Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

Abstract

Background: Family caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.

Aim: This study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).

Design: Multicentre, cross-sectional study.

Settings/participants: Family caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).

Results: 138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach's alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.

Conclusions: The DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

Keywords: clinical assessment; family management; hospice care; psychological care; supportive care; terminal care.

Figure 1

Caregiver Emotional Distress Detection Questionnaire (DME-C) administered to the main caregivers of patients with advanced or end-stage illness.

Figure 2

Receiver-operating characteristic (ROC) curve to determine the sensitivity-specificity of the overall score on the DME-C scale.