BACKGROUND:The recently refined Demoralization Scale-II (DS-II) is a 16-item, self-report measure of demoralization. Its 2 factorsMeaning and Purpose and Distress and Coping Ability-demonstrate sound internal validity, including item fit, unidimensionality, internal consistency, and test-retest reliability. The convergent and discriminant validity of the DS-II with various measures is reported here. METHODS: Patients who had cancer or other progressive diseases and were receiving palliative care (n 5 211) completed a battery of questionnaires, including the DS-II and measures of symptom burden, quality of life, depression, and attitudes toward the end of life. Spearman q correlations were determined to assess convergent validity. Mann-Whitney U tests with calculated effect sizes were used to examine discriminant validity and establish the minimal clinically important difference (MCID). Cross-tabulation frequencies with chi-square analyses were used to examine discriminant validity with major depression. RESULTS: The DS-II demonstrated convergent validity with measures of psychological distress, quality of life, and attitudes toward the end of life. It also demonstrated discriminant validity, as the DS-II differentiated patients who had different functional performance levels and high/low symptoms, with a difference of 2 points between groups on the DS-II considered clinically meaningful. Furthermore, discriminant validity was demonstrated, as comorbidity with depression was not observed at moderate levels of demoralization. CONCLUSIONS: The DS-II has sound psychometric properties and is an appropriate measure of demoralization. Given its structural simplicity and brevity, it is likely to be a useful tool in meaning-centered therapies. Cancer 2016;122:2260-7. V C 2016 American Cancer Society.KEYWORDS: cancer, construct validity, convergent validity, demoralization, discriminant validity, external validity, revalidation. INTRODUCTIONThe Demoralization Scale-II (DS-II) is a recently refined and revalidated 16-item, self-report measure of demoralization. 1 Demoralization is a maladaptive coping response conceptualized as a loss of meaning and purpose, with feelings of hopelessness and helplessness. 2 It is understood to arise in response to a stressful event or situation, such as the suffering associated with the diagnosis or experience of an advanced cancer. 2 In our recent systematic 3 and conceptual 4 reviews, we provided a discussion on the differences between demoralization and depression and highlighted the finding that there is a level of overlap between these constructs. In a companion to this article in this issue of Cancer, we report the internal validity of the DS-II as a 2-factor model (comprising two 8-item factors: Meaning and Purpose and Distress and Coping Ability) that demonstrated psychometrically sound item fit, unidimensionality, and reliability in patients receiving palliative care. 1 The reduced number of items and the simplified response format make the DS-II more user-friendly in the advanced...
BACKGROUND:The Demoralization Scale (DS) was initially validated in 2004 to enable the measurement of demoralization in patients with advanced cancer. Subsequent shortcomings indicated the need for psychometric strengthening. Here, the authors report on the refinement and revalidation of the DS to form the DS-II, specifically reporting the scale's internal validity. METHODS: Patients with cancer or other progressive diseases who were receiving palliative care (n 5 211) completed a revised version of the 24-item DS and a measure of symptom burden (the Memorial Symptom Assessment Scale). Exploratory factor analysis and Rasch modeling were used to evaluate, modify, and revalidate the scale, providing information about dimensionality, suitability of response format, item fit, item bias, and item difficulty. Test-retest reliability was examined for 58 symptomatically stable patients at a 5-day follow-up. RESULTS: Exploratory factor analysis supported a 22-item, 2-component model. Separate Rasch modeling of each component resulted in collapsing the response option categories and removing 3 items from each component. Both final 8-item subscales met Rasch model expectations and were appropriate to sum as a 16-item total score. The DS-II demonstrated internal consistency and test-retest reliability (Meaning and Purpose subscale: a 5 .84; intraclass correlation [ICC] 5 0.68; Distress and Coping Ability subscale: a 5 .82; ICC 5 0.82; total DS: a 5 .89; ICC 5 0.80). CONCLUSIONS: The DS-II is a 3-point response, self-report scale comprising 16 items and 2 subscales. Given its revalidation, psychometric strengthening, and simplification, the DS-II is an improved and more practical measure of demoralization for research and clinical use. External validation of the DS-II will be reported subsequently. Cancer 2016;122:2251-9. V C 2016 American Cancer Society.KEYWORDS: psychometrics, cancer, reliability, validity, adjustment, coping behavior, demoralization, Rasch modeling. INTRODUCTIONDemoralization has become increasingly recognized in palliative care as a clinical issue requiring assessment and treatment. 1,2 Understood as a state of maladaptive coping, demoralization develops with symptoms of hopelessness and helplessness associated with loss of purpose and meaning in life. 1 In a recent systematic review of 25 studies, clinical prevalence rates for demoralization ranged from 13% to 18% in patients with progressive diseases like cancer. 3 The morale of any patient fluctuates dimensionally from optimism to mild disheartenment, to greater despondency, and potentially to deep despair, which can be associated with a desire for hastened death. 4 Thus, the importance of measuring demoralization has been emphasized with reference to the risk of suicide and its potential relevance in end-of-life decision making. 1 Access to a psychometrically sound measure aids in the clinical assessment of demoralization. 5 Our preliminary validation of the Demoralization Scale (DS) in 2004 created a 24-item self-report scale that proved to be a use...
ObjectiveMeaning and Purpose (MaP) therapy aims to enhance meaning-based coping through a life review that focuses on the value and worth of the person, key relationships, sources of fulfillment, roles, and future priorities in living life out fully. We sought to test the feasibility and acceptability of a six-session model of MaP therapy against a wait-list control cohort in a pilot study seeking effect sizes on measures of adaptation.MethodWe randomized patients with advanced cancer to MaP therapy or wait-list control, with measures administered at baseline and after 6–8 weeks. Wait-list patients could then crossover to receive therapy, with further measures collected postintervention. Adherence to the manualized model was sustained through weekly supervision and fidelity coding of recorded sessions. We used generalized estimating equations to control for baseline and any correlation of data.ResultFrom 134 eligible participants, 57 (43%) consented, and 40 of 45 (89%) offered therapy completed 6 sessions. Key barriers to consenting patients were poor health (15 refusers and 4 withdrawals) and death intervened in 6 participants. MaP therapy generated adequate effect sizes in posttraumatic growth (new possibilities, appreciation of life, and personal strength) and life attitudes (choices and goal seeking) to permit calculation of power for a formal randomized, controlled trial.Significance of resultsDelivery of this model of existentially oriented therapy is feasible and acceptable to patients. A properly powered randomized controlled trial is justified to examine the efficacy of this intervention.
Patients with a life-limiting illness had worse outcomes post-rapid response team consultation. Our findings suggest that a routine clarification of goals of care for this cohort, within 3 days of hospital admission, may be advantageous. These discussions may provide clarity of purpose to treating teams, reduce the burden of unnecessary interventions and promote patient-centred care agreed upon in advance of any deterioration.
Background Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s. Methods This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. Conclusion We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study. Trial registration Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.
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