Demoralization Is 'Part of Vision' of Care for Cancer Patients

Roxanne Nelson, BSN, RN

August 02, 2016

Demoralization is becoming increasingly recognized in the palliative care setting as a clinical problem that requires assessment and treatment. Prevalence rates range from 13% to 18% in patients with progressive diseases such as cancer.

Defined as a "maladaptive coping response conceptualized as a loss of meaning and purpose, with feelings of hopelessness and helplessness," the phenomenon can be treated, say researchers who report the refinement of a tool to measure demoralization.

The Demoralization Scale (DS) was developed in 2004. Researchers have now revised the tool into a shorter and more concise version (DS II).

Both the internal and external validations of the DS II were reported in the July 15 issue of Cancer.

"The lowering of morale occurs across a spectrum where, at one end, some level of disheartenment is a comprehensible response to the predicament and is not pathological, while at the other end of the spectrum, the response becomes pathological and would constitute the development of a psychiatric disorder," explained study author David W. Kissane, MBBS, MPM, MD, from the Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Australia.

"This severe state of lowered morale is what we have been calling 'demoralization,' and, as it can lead to suicidal thinking, there is a strong case that it is a morbid process for the person involved," he told Medscape Medical News.

The DS II can be an important tool in assessing patients at risk for or showing symptoms suggestive of demoralization.

"The DS II is an improved measure of demoralization which can be used to monitor change with therapeutic interventions," explained Dr Kissane. "It will assist in the recognition of and then treatment of those 13% to 18% of patients who get into trouble because of their lowered morale and struggle to cope, which causes them to feel hopeless, trapped, helpless, such that life starts to lose meaning, and they can't see the point of going forward."

"Part of the Vision"

The reports confirm that demoralization is a significant clinical problem that needs to be "part of the vision physicians should have when treating patients with cancer," comment Luigi Grassi, MD, and Maria Giulia Nanni, MD, from the University of Ferrara, Italy, in an accompanying editorial.

"Indeed, the mandate of oncology is to promote the healing of individuals afflicted with cancer in an environment of global, person-centered care," they write.

The two articles have provided further support "for this vision and the urgent need to sensitize physicians about how to improve their discernment of cancer patients' psychosocial dimensions by going further with the assessment of general emotional distress to more specific aspects of suffering, such as demoralization," they add.

Importance of Correct Assessment

The concept of demoralization is not a new one, the editorialists comment.

Introduced into the clinical setting by psychiatrist and psychotherapist Jerome D. Frank in the 1960s and 1970s, it is used to define a syndrome of existential distress ("disturbance," "suffering") that occurs in patients who are dealing with severe conditions such as a physical illnesses or mental disorders, in particular, disorders that threaten "life or the integrity of being.

"Demoralization denotes a persistent failure of coping with internally or externally induced stress and is one of the most common reasons individuals seek psychotherapeutic treatment," the editorialists write.

Therefore, the correct assessment of demoralization, including application of the DS-II, as developed in these new reports, is extremely important, the editorialists note.

The DS, which was initially validated to enable the measurement of demoralization in patients with advanced cancer, is a 24-item self-report scale that has proven useful in measuring patients who are having problems coping.

"Recognition [of demoralization] has been steadily growing across the past 10 to 15 years, evidenced by the original Demoralization Scale being translated into more than 10 languages and initiating a series of studies in many countries," said Dr Kissane.

But the tool had some shortcomings, note Dr Kissane and his colleagues. In clinical experience, for example, the length of the DS appeared to present a burden for some patients.

In addition, some of the items were confusing to patients, which reduced the reliability of responses.

Revised and "User Friendly"

Therefore, the authors decided to refine the DS and revalidate the new model. The DS II was developed and tested with a cohort of 211 patients, 22 of whom had a progressive disease other than cancer.

The result was a 16-item, two-component scale with sound psychometric properties, which the authors note should be more "user friendly" in advanced disease settings. The scale demonstrated internal consistency and test-retest reliability.

The two components or subscales are Meaning and Purpose, which combine items from the original Loss of Meaning and Purpose and Helplessness subscales into a single factor. "This subscale will be a useful response measure in meaning-centered therapies," say the authors.

In similar fashion, the second subscale, Distress and Coping Ability, combines items that formed the Dysphoria, Disheartenment, and Sense of Failure subscales of the original DS.

"This subscale will likely be a good indicator of response to cognitive and supportive therapies," the authors write.

The investigators also conducted an external validation of the DS II to determine the convergent and discriminant validity of the tool with various measures.

Using the same cohort of patients, they found that the DS II demonstrated convergent validity with measures of psychological distress, quality of life, and attitudes toward the end of life.

The tool also showed discriminant validity, because it was able to differentiate patients with varying functional performance levels and high/low symptoms.

Incorporating the DS II into routine palliative care should not be a problem, Dr Kissane pointed out. "Good physicians are indeed concerned about the whole person, including how they are coping," he said. "Comprehensive cancer centers have departments of psycho-oncology under a variety of names."

Dr Kissane noted that he headed up this type of department at Memorial Sloan Cancer Center in New York City for 10 years and that it is in this type of department where patients can be referred and treated. "The International Union of Cancer Care has recognized distress as the sixth vital sign and sees the treatment of this as a basic human right."

Clearly, referral to a psycho-oncologist is appropriate. "We have good treatments for demoralization, whether meaning-centered therapy, which once might have been called an existentially oriented therapy, or supportive-expressive therapy, or cognitively oriented therapy," he added.

The studies were supported by the Bethlehem Griffiths Research Foundation. The authors and editorialists have disclosed no relevant financial relationships.

Cancer. 2016;122:2251-9, 2260-7. Study 1, abstract; Study 2, abstract; Editorial


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