Prof. David Kissane1* | Prof. Anja Mehnert2* | Mr. Tim Hartung2 | Dr. Gabriele Schmutzer2 |
Prof. Luigi Grassi3* |
Dr. Maria Nanni3 | Dr. Sara Massarenti3 | Dr. Silvana Sabato3 | Dr. Rosangela Caruso3 | Dr. Sigrun Vehling4* |
Dr. Sophie Robinson1 | Dr. Joanne Brooker5
1
Monash University, Clayton, Victoria, Australia;2University Medical Center Leipzig, Leipzig, Germany;3University of Ferrara, Ferrara, Italy; 4
University Medical Center Hamburg‐Eppendorf, Hamburg, Germany; 5Szalmuk Family Psycho
‐Oncology Unit, Cabrini Health, Malvern, Australia
Background: Demoralization is a state of lowered morale and poor coping that can arise with the existential challenges of cancer and its treatment, and causes clinically significant distress or impairment in social, occupational or other important areas of functioning. The poor coping and low morale can be associated with hopelessness, helpless- ness or feeling stuck about being able to change the situation, mean- inglessness or pointlessness, purposelessness, reduced dignity or self‐ worth as a person, doubts about the value of continued life, desire for hastened death or suicidal thoughts or plans. Thus, demoralization can be associated with significant suffering, making its recognition and treatment a vital clinical goal.
Methods: Four distinct observational studies of demoralization from varied countries will examine its recognition, relationships and clinical implications.
Results: These studies will 1) examine its prevalence in a cancer com- pared with a matched community sample (n = 2016); 2) explore its rela- tionship with dignity and spiritual wellbeing (n = 164); 3) assess its impact on mental disorders and suicidal thinking (n = 430); and 4) examine its measurement to discern how demoralization differentiates functional status, symptom burden and level of clinical depression (n = 211).
Conclusions: Symposium attendees will better understand the nature of demoralization as found in cancer care, appreciate potential diag- nostic criteria, learn about risk factors and comorbidities, and gain insight into how it can be treated in the clinical setting.
Discussant: Dr John M. de Figueiredo
Department of Psychiatry, Yale Medical School, Connecticut, USA Supporting Abstract 1:
Demoralization in cancer patients and a population‐based comparison sample
Anja Mehnert1, PhD, Tim J Hartung1, BA, Gabriele Schmutzer1, PhD, Sigrun Vehling2,3, PhD
Author affiliations 1
Department of Medical Psychology and Medical Sociology, Section of Psychosocial Oncology, University Medical Center Leipzig, Leipzig, Germany
2Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg‐Eppendorf, Hamburg, Germany
3 Department of Supportive Care at the Princess Margaret Cancer Centre, University of Toronto, Canada
Background and Purpose: Severe physical illness such as cancer can lead to demoralization, a syndrome that has been described as a com- bination of distress and a self‐perceived incapacity to deal effectively with a specific stressful situation. We aimed to compare demoraliza- tion between cancer patients and the general population, hypothesiz- ing higher levels of demoralization in cancer patients.
Methods: We analysed a subsample of 1008 cancer patients with mixed tumour entities (mean age 58 years, 51% women, and 29% breast cancer) from an epidemiological cross‐sectional study in Ger- many. We obtained age and gender matched comparison group data from 1008 individuals from a representative survey of the general pop- ulation in Germany. All study participants completed the validated Ger- man version of the Demoralization scale.
Results: Cancer patients showed significantly higher levels of demoral- ization compared with the general population for the total scale score
(p < 0.001;η2= .032) and for all dimensions of demoralization: loss of meaning and purpose (p < 0.001; η2= .011), dysphoria (p < 0.001; η2= .024), disheartenment (p < 0.001;
η2= .059), helplessness (p < 0.001; η2= .066), and sense of failure (p = 0.009; η2= .004) (MANOVA). Effect sizes were overall small and moderate only for help- lessness and sense of failure.
Conclusion: As hypothesized, cancer patients are significantly more demoralized compared with the general population. Given the large sample sizes in both groups, however, mean differences are small for the majority of dimensions. More research is needed about factors other than cancer such as age‐related distress that might contribute to demoralization in the general population as well.
Supporting Abstract 2:
Demoralization and dignity in Italian patients with cancer
Luigi Grassi, M.D:, Maria Giulia Nanni, M.D., Sara Massarenti, PhD, Silvana Sabato, PhD, Rosangela Caruso, M.D., PhD
Institute of Psychiatry, Department of Biomedical and Specialty Surgi- cal Sciences, University of Ferrara; and University Hospital Psychiatry Unit (Program on Psycho‐Oncology and Psychiatry in Palliative Care), Integrated Department of Mental Health, S. Anna University Hospital, Ferrara, Italy
Background/Aim: Demoralization, as a continuum state from discour- agement to despair has been repeatedly examined in cancer setting. The aim of the study was to explore the inter‐relationship between demoralization dimensions and dignity among cancer patients. Methods: A series of patients with cancer (n = 164) were submitted to a series of psychosocial instruments. Each patient was submitted to the DCPR interview – demoralization module, the Demoralization scale (DS), the Patient Dignity Inventory (PDI), the FACIT spiritual well‐being questionnaire, as well as the Prime MD Patient Health Questionnaire (PHQ‐9) to assess depression.
Results: Loss of meaning and purpose (alpha = 0.893), disheartenment (alpha = 0.864), dysphoria (alpha = 0.653) and sense of failure (alpha = 0.739) were found as part of the construct of demoralization. Dignity was associated with all the dimensions of demoralization, as well as to spirituality and depression. DS Disheartenment (B = .163; p≤ .01) and DS Helplessness (B = .170; p ≤ .05) significantly predicted a DCPR diagnoses of demoralization, while loss of dignity was a predic- tor of demoralization and poor spiritual well‐being.
Conclusions: Demoralization, in turn, represented a significant condi- tion that a specific scale (DS scale) was able to define in all its variables (Loss of Meaning; Dysphoria; Disheartenment; Helplessness; Sense of Failure), more than a semi‐structured interview (DCPR demoralization). Also Loss of Dignity was a significant predictor for development of demoralization, and it was positively related with depression. Supporting Abstract 3:
The association between mental disorders and demoralization in cancer
Presenting author: Sigrun Vehling
Affiliation: Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg‐Eppendorf, Hamburg, Germany Background/Purpose: Knowledge is limited on the relationship between mental disorders and demoralization, a distinct syndrome of disheartenment, helplessness and loss of meaning. We investi- gated the association between mood, anxiety and adjustment
disorders, subthreshold symptoms and demoralization in a mixed can- cer sample.
Methods: We used an ICD‐10 based structured diagnostic interview to assess the prevalence of mental disorders in a study representative for tumour entities and treatment settings in Germany. A subsample of n = 430 patients (51% female, 25% advanced cancer) completed the Demoralization Scale (DS) and Patient Health Questionnaire‐9 (PHQ‐ 9). We conducted regression analyses controlling for demographic and medical factors to determine the predictive impact of mental dis- orders on demoralization and PHQ depression.
Results: Diagnosis of a mental disorder predicted a significantly higher level of demoralization, with small to moderate effects (mood disor- ders: d = 0.51, p < .001; anxiety disorders: d = 0.38, p < .001). In com- parison, effects were significantly lower on PHQ depression (mood disorders: d = 0.31, p < .001, pDS‐PHQ = .025; anxiety disorders: d = 0.17, p = .036, pDS‐PHQ = .017). Adjustment disorder was associ- ated with demoralization (d = 0.29, p = .005) and depression (d = 0.19, p = .033, pDS‐PHQ = .189). Suicidal symptoms were significantly closer related to demoralization (d = 0.37, p < .001) than to depression (d = 0.13, p = .104, pDS‐PHQ = .009), likewise in absence of a mental disorder (d = 0.24 vs. d = 0.05, pDS‐PHQ = .040).
Conclusions: Results are consistent with understanding demoralization as a dimensional phenomenon that captures clinically relevant symp- toms of existential distress beyond the diagnosis of mental disorders. Our data indicate that demoralization is especially useful in identifying patients with suicidal thoughts or a desire for hastened death in absence of a mental disorder.
Supporting Abstract 4:
The Demoralization Scale‐II: an improved measure of demoralization Sophie Robinson1,2, David. W. Kissane1,2,3, Joanne Brooker1,3 1Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia
2School of Psychological Sciences, Monash University, Clayton, Australia
3Szalmuk Family Psycho
‐oncology Unit, Cabrini Health, Malvern, Australia
Background: Demoralization is the state of lowered morale, reduced optimism and poor coping, which develops as a result of advanced ill- ness and becomes associated with loss of hope, meaning and purpose in life. A recent systematic review of demoralization identified 10 stud- ies (2295 subjects) in which the Demoralization Scale (DS) (Kissane et al, 2004) was used to reveal the prevalence of clinically significant demoralization in 13%–18% of participants. Variations in factor struc- ture pointed to some limitations in the original DS, whose refinement and revalidation was planned for in this study.
Methods: A cohort of 211 patients receiving palliative care completed a revised DS with other measures of symptom burden, quality of life, depression, and attitudes toward the end‐of‐life. Factor analysis and Rasch modelling provided information about dimensionality, suitability of response format, item‐fit, ‐bias, and –difficulty; reliability and valid- ity of the resultant subscales were explored.
Results: The refined DS‐II was comprised 16 items; the 2 subscales, each of 8 items, were named“meaning and purpose” (Cronbach's alpha 0.84) and “distress and coping ability” (Cronbach's alpha 0.82). IRT required a 3‐point response format. Concurrent and divergent validity
was strong. The DS‐II differentiated patients with different Karnofsky function scores, levels of symptom burden and depression were not found at moderate levels of demoralization.
Conclusions: This improved measure of demoralization will assist in ongoing studies of the recognition and treatment of clinically meaning- ful states of demoralization.