Abstract
Purpose: The Demoralization scale (DS-I) is a validated and frequently used instrument to assess existential distress in patients with cancer and other severe medical illness. The purpose of this study was to provide normative values derived from a representative German general population sample and to analyze the correlational structure of the DS-I.Methods: A representative sample of the adult German general population completed the DS-I (24 Items), the Emotion Thermometers (ET) measuring distress, anxiety, depression, anger, need for help, and the Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACIT-fatigue).Results: The sample consists of N = 2,407 adults (mean age = 49.8; range = 18–94 years), 55.7% women). The percentages of participants above the DS-I cutoff (≥30) was 13.5%. The mean scores of the DS-I dimensions were as follows: (1) loss of meaning and purpose: M = 2.78 SD = 4.49; (2) disheartenment: M = 3.19 SD = 4.03; (3) dysphoria M = 4.51 SD = 3.20; (4) sense of failure: M = 6.24 SD = 3.40; and for the DS-I total score: M = 16.72 SD = 12.74. Women reported significantly higher levels of demoralization than men, with effect sizes between d = 0.09 (Loss of Meaning) and d = 0.21 (Dysphoria). Age was not associated with demoralization in our sample. DS-I reliability was excellent (α = 0.94) and DS-I subscales were interrelated (r between 0.31 and 0.87) and significantly correlated with ET, especially depression, anxiety, and need for help and fatigue (r between 0.14 and 0.69).Conclusions: In order to use the DS-I as a screening tool in clinical practice and research the normative values are essential for comparing the symptom burden of groups of patients within the health care system to the general population. Age and sex differences between groups of patients can be accounted for using the presented normative scores of the DS-I.
Highlights
Demoralization describes a syndrome of existential distress and despair
Normative scores for the DS-I total score are given in Table 2, based on the total sample
It shows what percentage of the population reaches the indicated value or lower on the DS-I. 13.5% of the general population reported demoralization scores that were one standard deviation above the mean value in our sample
Summary
Demoralization describes a syndrome of existential distress and despair. It encompasses feelings of entrapment and alienation, states of helplessness and hopelessness with loss of meaning and purpose in life (Kissane et al, 2001). Previous studies in cancer patients (Mehnert et al, 2011; Lee et al, 2012), patients with lupus (Katz et al, 2001) or after heart transplant (Grandi et al, 2010) have shown high levels of demoralization in patients who are not married or cohabiting. Full time employment has been shown to be associated with lower demoralization than unemployment in cancer patients (Katz et al, 2001; Lee et al, 2012). Sex, and education, mixed findings have been reported in the literature (Robinson et al, 2015)
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