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The development and elaboration of a conceptualization of existential distress in patients with advanced disease is crucial in order to optimize our clinical response within palliative medicine. Demoralization is one expression of existential distress. Its empirical study will be greatly enhanced by a self-report measure that captures its dimensions and intensity. We report here on the development and testing of the Demoralization Scale in 100 patients with cancer. Factor analysis identified five relatively distinct dimensions: loss of meaning, dysphoria, disheartenment, helplessness, and sense of failure. These factors show high internal reliability, and convergent validity with the McGill Quality of Life Scale, Patient Health Questionnaire, Beck Depression Inventory, Beck Hopelessness Scale, Hunter Opinions and Personal Expectations Scale, and the Schedule of Attitudes toward Hastened Death. Its divergent validity is demonstrated through the differentiation of a subgroup of patients with high demoralization who do not meet DSM-IV categorization for a diagnosis of major depression. Confirmatory validation is needed for the scale to be used as a measure of change in interventions designed to treat demoralization.
Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary clinical team, which should include palliative care (PC), psychology, social work, oncology, and nursing representatives. The function of PC is to provide impeccable pain and other symptom control and to coordinate care as the disease progresses. Features unique to AYAs with cancer include the psychosocial developmental phases, a young person facing death, grief, and bereavement. Pharmacologic and medical interventions by PC in AYAs are broadly similar to adults. Developing trust and being flexible are key skills that PC must use with AYAs. There is a paucity of high-quality controlled studies in the PC literature in general and AYA-PC in particular. Therefore, the methodology of this article is largely based on the narrative and clinical experience. The experience is based on clinicians' work with AYAs with cancer in Israel and Australia. Clinical lessons will be drawn by comparing and contrasting the cultures. Nevertheless, most PC clinical interventions, both pharmacologic and psychosocial, are derived from literature where there is a good evidence base. Future development of PC within AYAs should be coordinated at a national level via appropriate palliative and oncology professional organizations.
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An abstract is not available for this content. As you have access to this content, full HTML content is provided on this page. A PDF of this content is also available in through the ‘Save PDF’ action button.
An abstract is not available for this content. As you have access to this content, full HTML content is provided on this page. A PDF of this content is also available in through the ‘Save PDF’ action button.
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