Refinement and revalidation of the demoralization scale: The DS-II-external validity.

BACKGROUND: The recently refined Demoralization Scale-II (DS-II) is a 16-item, self-report measure of demoralization. Its 2 factors-Meaning 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 = 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 ρ 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. © 2016 American Cancer Society.

Refinement and revalidation of the demoralization scale: The DS-II-internal validity.

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 = 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: α = .84; intraclass correlation [ICC] = 0.68; Distress and Coping Ability subscale: α = .82; ICC = 0.82; total DS: α = .89; ICC = 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. © 2016 American Cancer Society.

The lived experience of volunteering in a palliative care biography service.

OBJECTIVE: Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology. METHOD: The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis. RESULTS: Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography. SIGNIFICANCE OF RESULTS: It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

Anxiety in the management of localised prostate cancer by active surveillance.

OBJECTIVES: To describe a range of anxieties in men on active surveillance (AS) for prostate cancer and determine which of these anxieties predicted health-related quality of life (HRQL). PATIENTS AND METHODS: In all, 260 men with prostate cancer on AS were invited to complete psychological measures including the Hospital and Anxiety Depression Scale; the State-Trait Anxiety Inventory-Trait Scale; the Memorial Anxiety Scale for Prostate Cancer; and the Functional Assessment of Cancer Therapy Scale-Prostate. Overall, 86 men with a mean (sd, range) age of 65.7 (5.4, 51-75) years returned data, yielding a response rate of 33%. Outcome measures were standardised psychological measures. Pearson's correlations were used to examine bivariate relationships, while regression analyses were used to describe predictors of dependent variables. RESULTS: When compared with the findings of prior research, the men in our cohort had normal levels of general anxiety and illness-specific anxiety and high prostate cancer-related HRQL. Age, trait anxiety and fear of recurrence (FoR) were significant predictors of prostate cancer-related HRQL; trait anxiety and FoR were significant predictors of total HRQL. Results should be interpreted in context of sample characteristics and the correlational design of the study. CONCLUSIONS: Participants reported low levels of anxiety and high HRQL. Trait anxiety and FoR were significant predictors of both prostate cancer-related and total HRQL. The administration of a short trait-anxiety screening tool may help identify men with clinically significant levels of anxiety and those at risk of reduced HRQL.

Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers.

BACKGROUND: There have been many studies on the unmet needs of palliative care patients and carers from the perspective of bereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients and their carers have received little research attention. AIM: As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers. DESIGN: The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DATA SOURCES: PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. RESULTS: Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. CONCLUSIONS: The focus therefore should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously.

Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing.

BACKGROUND: Health literacy refers to an individual's ability to engage with health information and services. Cancer caregivers play a vital role in the care of people with cancer, and their capacity to find, understand, appraise and use health information and services influences how effectively they are able to undertake this role. The aim of this study was to develop an instrument to measure health literacy of cancer caregivers. METHOD: Content areas for the new instrument were identified from a conceptual model of cancer caregiver health literacy. Item content was guided by statements provided by key stakeholders during consultation activities and selected to be representative across the range of cancer caregiver experiences. Content validity of items was assessed through expert review (n = 7) and cognitive interviews with caregivers (n = 16). RESULTS: An initial pool of 82 items was generated across 10 domains. Two categories of response options were developed for these items: agreement with statements, and difficulty undertaking presented tasks. Expert review revealed that the majority of items were relevant and clear (Content Validity Index > 0.78). Cognitive interviews with caregivers suggested that all except three items were well understood. CONCLUSION: A resultant 88 item questionnaire was developed to assess cancer caregiver health literacy. Further work is required to assess the construct validity and reliability of the new measure, and to remove poorly performing and redundant items, which will result in a shorter, final measure. The new measure has the potential to inform the development and evaluation of interventions and the improvement of health service delivery to cancer caregivers.

Sexual function, incontinence, and wellbeing in women after rectal cancer--a review of the evidence.

INTRODUCTION: Colorectal cancer (CRC) is the second most common cancer. One-third of these cancers occur in the rectum. Treatment of rectal cancer involves surgery with/without radiotherapy and chemotherapy. Surgery is undertaken to prevent damage to the nerves controlling bladder, bowel, and sexual organs, whether this translates into preservation of urinary and fecal continence and sexual function and, ultimately, quality of life (QoL) is not known. AIM: The aim of this review was to summarize the literature regarding the impact of treatment for rectal cancer on bladder and bowel continence, sexual function and QoL in women. MAIN OUTCOME MEASURES: A comprehensive review of the current literature on sexual function, incontinence and wellbeing in women after treatment for rectal cancer highlighting prevalence rates, trial design, and patient population. METHODS: We conducted a systematic search of the literature using A systematic search of the literature using Medline (Ovid, 1946-present) and PubMed (1966-2011) for English-language studies that included the following search terms: "colorectal cancer," or "rectal cancer," or "rectal neoplasm," and "sexual function," or "sexual dysfunction," or "wellbeing," or "QoL," or "urinary or fecal incontinence." RESULTS: Although around 1/3 of women aged 50 to 70 years report lack of sexual desire, sexual function problems after treatment for rectal cancer are in the order of 60% among women. QoL improves with length of survival. Urinary and fecal incontinence are ongoing concerns for many women after treatment with rates up to 60%. CONCLUSION: There is a gap in our knowledge of the effects of rectal cancer and its treatment on urinary and fecal continence, sexual function and QoL in women. There is a need for studies of sufficient size and duration to gain a better understanding of the disease and its management and the long-term effects on these parameters. This information is needed to develop preventative health care plans for women treated for rectal cancer that target those most at risk for these adverse outcomes.

Health literacy of caregivers of adult care recipients: A systematic scoping review.

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English-language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight-item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut-off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self-management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.

Measuring cancer caregiver health literacy: Validation of the Health Literacy of Caregivers Scale-Cancer (HLCS-C) in an Australian population.

Caregivers have been largely neglected in health literacy measurement. We assess the construct validity, and internal consistency of the Health Literacy of Caregivers Scale-Cancer (HLCS-C), and present a revised, psychometrically robust scale. Using data from 297 cancer caregivers (12.4% response rate) recruited from Melbourne, Australia between January-July 2014, confirmatory factor analysis (CFA) was conducted to evaluate the HLCS-C's proposed factor structure. Items were evaluated for: item difficulty, unidimensionality and overall item fit within their domain. Item-threshold-ordering was examined though one-parameter Item Response Theory models. Internal consistency was assessed using Raykov's reliability coefficient. CFA results identified 42 poorly performing/redundant items which were subsequently removed. A 10-factor model was fitted to 46 acceptable items with no correlated residuals or factor cross-loadings accepted. Adequate fit was revealed (χ2WLSMV  = 1463.807[df = 944], p < .001, RMSEA = 0.043, CFI = 0.980, TLI = 0.978, WRMR = 1.00). Ten domains were identified: Proactivity and determination to seek information; Adequate information about cancer and cancer management; Supported by healthcare providers (HCP) to understand information; Social support; Cancer-related communication with the care recipient (CR); Understanding CR needs and preferences; Self-care; Understanding the healthcare system; Capacity to process health information; and Active engagement with HCP. Internal consistency was adequate across domains (0.78-0.92). The revised HLCS-C demonstrated good structural, convergent, and discriminant validity, and high internal consistency. The scale may be useful for the development and evaluation of caregiver interventions.

The Relationship Between Poor Quality of Life and Desire to Hasten Death: A Multiple Mediation Model Examining the Contributions of Depression, Demoralization, Loss of Control, and Low Self-worth.

CONTEXT: The risk of suicide is elevated in palliative care patients compared with the general population. Various psychological factors, including depression, demoralization, loss of control, and low self-worth, have been associated with a desire to hasten death. OBJECTIVES: The aim of this study was to investigate whether depression, demoralization, loss of control, and low self-worth mediated the relationship between global quality of life and desire to hasten death. METHODS: A sample of 162 palliative care patients completed measures of global quality of life, depression, demoralization, perceived control, self-worth, and desire to hasten death. A multiple mediation model with bootstrapping sampling tested the total (combined) indirect effect and individual indirect effects of depression, the two subscales of demoralization (Meaning and Purpose, and Distress and Coping Ability), perceived control, and self-worth. RESULTS: Depressive symptoms, loss of meaning and purpose, loss of control, and low self-worth mediated the direct effect of global quality of life on desire to hasten death. The Distress and Coping Ability component of demoralization was not a significant mediator. CONCLUSION: Depression, loss of meaning and purpose, loss of control, and low self-worth are strong clinical markers for desire to hasten death. Targeting these symptoms through existentially oriented therapies, such as meaning-centered therapy, may ameliorate suicidal thinking.

A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care.

Demoralization has been the subject of discussion in relation to end-of-life care. It is characterized by hopelessness and helplessness due to a loss of purpose and meaning. The purpose of this review was to consolidate the conceptual understanding of demoralization and argue for its existence as a psychiatric syndrome. The history of the construct is explored, including the nature of existential distress and related psychological conditions that precipitate demoralization. Recent definitions of demoralization are described and differentiated from similar constructs. Future directions are highlighted, specifically in relation to the assessment, diagnosis, and treatment of demoralization in palliative care. Overall, demoralization is a clinically useful construct for those facing existential threat, guiding the clinician toward efforts to restore morale, meaning, and purpose.

A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: a decade of research.

CONTEXT: Demoralization can be understood as a condition that results from existential conflict. It presents with symptoms of hopelessness and helplessness caused by a loss of purpose and meaning in life. It is a significant mental health concern given there can be an associated desire for hastened death. OBJECTIVES: The aim of this systematic review was to synthesize the recent empirical evidence on demoralization in patients with progressive disease or cancer, including prevalence rates; the relationships between demoralization and sociodemographic, disease- and treatment-related, and psychological factors; and the psychometric properties of demoralization measures. METHODS: A comprehensive literature search using key words and subject headings was performed following PRISMA guidelines with nine electronic bibliographic databases, resulting in 25 studies (33 articles) with a total of 4545 participants reviewed. Full articles underwent methodological quality assessment, and correlational information was synthesized according to the strength of evidence. RESULTS: The findings suggest that demoralization is prevalent in patients with progressive disease or cancer and clinically significant in 13%-18%. A range of factors were consistently associated with demoralization: poorly controlled physical symptoms, inadequately treated depression and anxiety, reduced social functioning, unemployment, and single status. The Demoralization Scale has demonstrated good psychometric properties across five studies. CONCLUSION: Overall, this systematic review was limited by the extent of variability in the characteristics of studies. Patients who are single, isolated or jobless, have poorly controlled physical symptoms, or have inadequately treated anxiety and depressive disorders are at increased risk for demoralization. Clinical recognition of demoralization can trigger more focused interventions.