Editorial
Creating your soul in every moment: Meaning, creativity, and attitude
- William Breitbart
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- Published online by Cambridge University Press:
- 24 September 2015, pp. 1139-1140
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Original Articles
Cancer-related fatigue and depression in breast cancer patients postchemotherapy: Different associations with optimism and stress appraisals
- Inbar Levkovich, Miri Cohen, Shimon Pollack, Karen Drumea, Georgeta Fried
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- 09 September 2014, pp. 1141-1151
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Objective:
Symptoms of depression and cancer-related fatigue (CRF) are common among breast cancer patients postchemotherapy and may seriously impair quality of life (QoL). This study aimed to assess the relationship between depression and CRF in breast cancer patients postchemotherapy and to examine their relationships to optimism and to threat and challenge appraisals.
Method:Participants included 95 breast cancer patients (stages 1–3) 1 to 6 months after completion of chemotherapy. Patients submitted personal and medical details and completed the following: physical symptom questionnaires (EORTC QLQ–C30, and QLQ–BR23), a symptoms of depression questionnaire (CES–D), the Fatigue Symptom Inventory (FSI), the Life Orientation Test (LOT–R), and a stress appraisals questionnaire.
Results:We found levels of depression, CRF, and appraisals of cancer as a threat to be moderate and levels of optimism and appraisals of cancer as a challenge to be high. Depression and CRF were positively associated. A multivariate regression analysis revealed that 51% of the CRF variance was explained and, together with physical symptoms and threat appraisal, were significantly associated with CRF. A total 67% of depression was explained and, and together with challenge and threat appraisals, were significantly associated with depression.
Significance of Results:Although CRF and depression were often experienced simultaneously and both were found to be higher among individuals who gave higher appraisals of cancer as a threat, only depression was related to optimism and challenge appraisals, while CRF was related mainly to intensity of physical symptoms. The different pattern of associations between optimism and appraisals warrants further clinical attention as well as future study.
Measuring social support in patients with advanced medical illnesses: An analysis of the Duke–UNC Functional Social Support Questionnaire
- Rebecca Saracino, Elissa Kolva, Barry Rosenfeld, William Breitbart
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- 09 September 2014, pp. 1153-1163
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Objective:
To date, no measure of social support has been developed specifically for either palliative care or oncology settings. The present study examined the psychometric properties of the Duke–University of North Carolina Functional Social Support Questionnaire (DUFSS) in order to (1) assess the adequacy of the scale in the context of severe medical illness and (2) evaluate whether a brief subset of items might generate roughly comparable utility.
Method:The 14-item DUFSS was administered to 1,362 individuals with advanced cancer or AIDS. Classical test theory (CTT) and item response theory (IRT) analyses were utilized to develop an abbreviated version of the DUFSS that maintained adequate reliability and validity and might increase the feasibility of its administration in a palliative care setting. The reliability and concurrent validity of the DUFSS-5 were evaluated in a separate validation sample of patients with advanced cancer.
Results:Analyses generated a five-item version of the DUFSS (the DUFSS-5) that collapsed response levels into only three options, instead of five. Correlations between the DUFSS-5 and measures of depression, quality of life, and desire for hastened death, as well as regression models testing the main-effect and buffering models of social support, provided support for the utility of the DUFSS-5.
Significance of results:Both the DUFSS and the abbreviated DUFSS-5 appear to have adequate reliability and validity in this setting. Moreover, the DUFSS-5 represents a potentially important option for healthcare researchers, particularly for those working in palliative care settings where issues of patient burden are paramount. Such analyses are critical for advancing the development and refinement of psychosocial measures, but have often been neglected.
Patients' priorities for treatment decision making during periods of incapacity: quantitative survey
- Annette Rid, Robert Wesley, Mark Pavlick, Sharon Maynard, Katalin Roth, David Wendler
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- 02 October 2014, pp. 1165-1183
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Objective:
Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.
Method:We employed a self-administered, quantitative survey of patients in a tertiary care center.
Results:Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.
Significance of Results:Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.
The routine use of the Edmonton Classification System for Cancer Pain in an outpatient supportive care center
- Joseph Arthur, Sriram Yennurajalingam, Linh Nguyen, Kimberson Tanco, Gary Chisholm, David Hui, Eduardo Bruera
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- 14 October 2014, pp. 1185-1192
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Objective:
There is no standardized and universally accepted pain classification system for the assessment and management of cancer pain in both clinical practice and research studies. The Edmonton Classification System for Cancer Pain (ECS–CP) is an assessment tool that has demonstrated value in assessing pain characteristics and response. The purpose of our study was to determine the relationship between negative ECS–CP features and some pain-related variables like pain intensity and opioid use. We also explored whether the number of negative ECS–CP features was associated with higher pain intensity.
Method:The electronic charts of 100 patients at an outpatient supportive care clinic in a comprehensive cancer center were reviewed for variables like patient characteristics, initial ECS–CP assessment, morphine equivalent daily dose (MEDD), opioid rotation, Edmonton Symptom Assessment Score (ESAS), and use of adjuvant analgesics.
Results:Some 91 of the 100 charts were eligible for analysis. The most common primary cancer type was gastrointestinal (22.1%). The median pain intensity was 6, and the median MEDD was 45 mg. Neuropathic pain was associated with higher median pain intensity (7 vs. 5, p = 0.007) and median MEDD requirement (83 vs. 30, p = 0.013). Psychological distress was associated with higher median pain intensity (7 vs. 5, p = 0.042). Incident pain was also associated with a trend toward higher pain intensity (6 vs. 5, p = 0.06). A higher number of negative ECS–CP features was associated with higher pain intensity (p = 0.01).
Significance of Results:The ECS–CP was successfully completed in the majority of patients, demonstrating its utility in routine clinical practice. Neuropathic pain and psychological distress were associated with higher pain intensity. Also, neuropathic pain was associated with a higher MEDD. A higher sum of negative ECS–CP features was associated with higher pain intensity. Further studies will be needed to verify and explore these observations.
Meaning-centered dream work with hospice patients: A pilot study
- Scott T. Wright, Pei C. Grant, Rachel M. Depner, James P. Donnelly, Christopher W. Kerr
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- 15 October 2014, pp. 1193-1211
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Objective:
Hospice patients often struggle with loss of meaning, while many experience meaningful dreams. The purpose of this study was to conduct a preliminary exploration into the process and therapeutic outcomes of meaning-centered dream work with hospice patients.
Method:A meaning-centered variation of the cognitive–experiential model of dream work (Hill, 1996; 2004) was tested with participants. This variation was influenced by the tenets of meaning-centered psychotherapy (Breitbart et al., 2012). A total of 12 dream-work sessions were conducted with 7 hospice patients (5 women), and session transcripts were analyzed using the consensual qualitative research (CQR) method (Hill, 2012). Participants also completed measures of gains from dream interpretation in terms of existential well-being and quality of life.
Results:Participants' dreams generally featured familiar settings and living family and friends. Reported images from dreams were usually connected to feelings, relationships, and the concerns of waking life. Participants typically interpreted their dreams as meaning that they needed to change their way of thinking, address legacy concerns, or complete unfinished business. Generally, participants developed and implemented action plans based on these interpretations, despite their physical limitations. Participants described dream-work sessions as meaningful, comforting, and helpful. High scores on a measure of gains from dream interpretation were reported, consistent with qualitative findings. No adverse effects were reported or indicated by assessments.
Significance of Results:Our results provided initial support for the feasibility and helpfulness of dream work in this population. Implications for counseling with the dying and directions for future research were also explored.
“The unpredictable death”—The last year of life for patients with advanced COPD: Relatives' stories
- Kristina Ek, Birgitta Andershed, Eva Sahlberg-Blom, Britt-Marie Ternestedt
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- 15 October 2014, pp. 1213-1222
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Objective:
The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.
Method:Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.
Result:All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.
Significance of Results:The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.
Depression means different things: A qualitative study of psychiatrists' conceptualization of depression in the palliative care setting
- Felicity Ng, Gregory B. Crawford, Anna Chur-Hansen
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- 21 October 2014, pp. 1223-1230
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Objective:
Medical practitioners conceptualize depression in different ways, which adds to the challenges of its diagnosis and treatment, as well as research in the palliative care setting. Psychiatric assessment is often considered the “gold standard” for diagnosis, therefore how psychiatrists conceptualize depression in this setting is pertinent. Our study aimed to investigate this issue.
Method:Psychiatrists working in palliative care in Australia were individually interviewed using a semistructured approach. Nine participants were interviewed to reach data saturation. Interview transcripts were analyzed for themes.
Results:Three overarching themes were identified: (1) depression means different things; (2) depression is conceptualized using different models; and (3) depression is the same concept within and outside of the palliative care setting. Participants explicitly articulated the heterogeneous nature of depression and described a different breadths of concepts, ranging from a narrow construct of a depressive illness to a broader one that encompassed depressive symptoms and emotions. However, depressive illness was a consistent concept, and participants considered this in terms of phenotypic subtypes. Participants used three models (spectral, dichotomous, and mixed) to relate various depressive presentations.
Significance of Results:Psychiatrists did not subscribe to a unitary model of depression but understood it as a heterogeneous concept comprised of depressive illness and other less clearly defined depressive presentations. Given the influence of psychiatric opinion in the area of depression, these findings may serve as a platform for further discussions to refine the concepts of depression in the palliative care setting, which in turn may improve diagnostic and treatment outcomes.
Meanings of eating deficiencies for people admitted to palliative home care
- Viktoria Wallin, Ida Carlander, P.-O. Sandman, Cecilia Håkanson
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- 22 October 2014, pp. 1231-1239
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Objective:
Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.
Method:This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.
Results:The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.
Significance of Results:Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.
Palliative treatment of thiamine-related encephalopathy (Wernicke's encephalopathy) in cancer: A case series and review of the literature
- Elie Isenberg-Grzeda, Alan John Hsu, Vaios Hatzoglou, Christian Nelso, William Breitbart
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- 23 October 2014, pp. 1241-1249
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Objective:
Thiamine-related encephalopathy (Wernicke's encephalopathy) is a neuropsychiatric syndrome caused by a vitamin B1 (thiamine) deficiency often associated with alcoholism. Cancer predisposes patients to thiamine deficiency unrelated to alcoholism, though many cases are missed clinically. The present report adds to the literature on thiamine as a palliative tool for thiamine-related encephalopathy (TRE) in cancer.
Method:From a larger series of TRE in cancer, we report on three cases with terminal illness.
Results:Case 1. A 61-year old woman with Hodgkin's lymphoma developed TRE over 13 days. Precipitants included a hypermetabolic state in the background of subacute thiamine deficiency. Diagnosis was supported by abnormal serum thiamine and positive MRI findings. Mental status improved within 36 hours of initiating thiamine 500 mg IV t.i.d. Case 2. A 68-year-old man with colon cancer metastatic to liver and bone developed TRE precipitated by C. difficile–related diarrhea superimposed on 3 months of low appetite and weight loss. Diagnosis was supported by abnormal serum thiamine, and thiamine 500 mg IV t.i.d. was initiated. Improvements in mental status began within 36 hours. Case 3. An 80-year-old man with squamous cell carcinoma developed TRE precipitated by systemic infection in the context of three weeks of dysphagia. Antibiotic treatment did not reverse his cognitive symptoms, and a diagnosis of TRE was made based on operationalized criteria. Thiamine 100 mg IV daily did not reverse his symptoms. On his 30th day of admission, thiamine was increased to 500 mg IV t.i.d., resulting in a rapid reversal of altered mental status.
Significance of Results:This report adds to the list of cancer types in which TRE/Wernicke's encephalopathy has been reported. It supports the use of higher doses of thiamine than are typically recommended in North America. Improvement following treatment allowed patients to engage with family and treatment teams prior to death.
A pilot study about female adolescent/young childhood cancer survivors' knowledge about reproductive health and their views about consultation with a fertility specialist
- J. Kim, J.E. Mersereau
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- 24 October 2014, pp. 1251-1260
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Objective:
Impaired fertility and reproductive health after cancer treatment is an important quality-of-life issue among female childhood cancer survivors (CCSs). This study aims to measure female CCSs' knowledge about their reproductive health and their exposure to and views about reproductive counseling (RC).
Method:This is a cross-sectional, web-survey study of female CCSs aged 18 to 45 years who were diagnosed with cancer before age 21 years and currently had no evidence of disease.
Results:Fifty-six CCSs participated (response rate = 48%; mean current age = 26). Knowledge about reproductive health after cancer treatment was severely limited within this sample of highly educated survivors (91% educated beyond high school), who provided correct answers only 32% of the time. Only 9 and 5% of the women had pursued RC with a fertility specialist before and after cancer treatment, respectively. The majority thought they had not been provided enough information about reproductive health. White ethnicity (p < 0.001), higher annual income (p = 0.007), and higher education level (p = 0.02) were significantly associated with a positive opinion about RC.
Significance of Results:A limited number of CCSs took advantage of RC in spite of their high interest in and limited knowledge about reproductive issues. Targeted referrals for RC may allow for improved decision making about reproductive options.
Exploring traditional end-of-life beliefs, values, expectations, and practices among Chinese women living in England: Informing culturally safe care
- Mei Lan Fang, Lorraine Halinka Malcoe, Judith Sixsmith, Louise Yuen Ming Wong, Matthew Callender
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- 27 October 2014, pp. 1261-1274
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Objective:
This study explores the end-of-life (EoL) beliefs, values, practices, and expectations of a select group of harder-to-reach Chinese women living in England.
Method:A cultural safety approach was undertaken to interpret 11 in-depth, semistructured interviews. Interviews were conducted in Mandarin and Cantonese. Transcripts were translated and back-translated by two researchers. Findings were analyzed using the technical analytical principles of grounded theory.
Results:The key themes generated from our analysis include: acculturation; differential beliefs and norms in providing care: family versus health services; language and communication; Eastern versus Western spiritual practices and beliefs; and dying, death, and the hereafter.
Significance of Results:End-of-life discussions can be part of an arduous, painful, and uncomfortable process, particularly for migrants living on the margins of society in a new cultural setting. For some Chinese people living in the United Kingdom, end-of-life care requires attention to acculturation, particularly Western versus Eastern beliefs on religion, spirituality, burial practices, and provision of care, and the availability of culturally specific care, all of which encompass issues related to gender. Stories of a purposive sample of Chinese women were viewed through a cultural safety lens to gain a deeper understanding of how social and cultural norms and expectations, in addition to the pressures of acculturation, impact gendered roles and responsibilities. The analysis revealed variations between/within Eastern and Western culture that resulted in pronounced, and oftentimes gendered, differences in EoL care expectations.
Assessment of decisional capacity: Prevalence of medical illness and psychiatric comorbidities
- Susanne Boettger, Meredith Bergman, Josef Jenewein, Soenke Boettger
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- 30 October 2014, pp. 1275-1281
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Objective:
Studies on decisional capacity have primarily focused on cognitive disorders, whereas noncognitive disorders remain understudied. The purpose of our study was to assess decisional capacity across a wide spectrum of medical and psychiatric disorders.
Method:More than 2,500 consecutive consults were screened for decisional capacity, and 336 consults were reviewed at Bellevue Hospital Center in New York. Sociodemographic and medical variables, medical and psychiatric diagnoses, as well as decisional capacity assessments were recorded and analyzed.
Results:Consults for decisional capacity were most commonly called for in male patients with cognitive and substance abuse disorders. Less commonly, consults were called for patients with mood or psychotic disorders. Overall, about two thirds of patients (64.7%) were deemed not to have decisional capacity. Among medical diagnoses, neurological disorders contributed to decisional incapacity, and among the psychiatric diagnoses, cognitive disorders were most frequently documented in cases lacking decisional capacity (54.1%) and interfered more commonly with decisional capacity than substance abuse or psychotic disorders (37.2 and 25%). In contrast, patients with mood disorders usually retained their decisional capacity (32%). Generally, the primary treatment team's assessment was accurate and was confirmed by the psychiatric service.
Significance of results:Although decisional capacity assessments were most commonly requested for patients with substance abuse and cognitive disorders, the latter generally affected the ability to make healthcare decisions the most. Further, cognitive disorders were much more likely to impair the ability to make appropriate healthcare decisions than substance abuse or psychotic disorders.
Examining family meetings at end of life: The model of practice in a hospice inpatient unit
- Mary Ann Meeker, Deborah P. Waldrop, Jin Young Seo
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- 31 October 2014, pp. 1283-1291
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Objective:
Our purpose was to rigorously examine the nature of family meetings as conducted in an inpatient hospice care unit in order to generate an inductive theoretical model.
Method:In this two-phase project, we first interviewed eight members of the interdisciplinary care team who participated in multiple family meetings each week. Interview questions explored why and how they conducted family meetings. Using an observation template created from these interview data, we subsequently conducted ethnographic observations during family meetings. Using the methods of grounded theory, our findings were synthesized into a theoretical model depicting the structure and process of formal family meetings within this setting.
Results:The core of the family meeting was characterized by cognitive and affective elements aimed at supporting the family and facilitating quality care by clarifying the past, easing the present, and protecting the future. This inductive model was subsequently found to be highly aligned with a sense of coherence, an important influence on coping, and adaptation to the stress of a life-limiting illness.
Significance of Results:Provider communication with family members is particularly critical during advanced illness and end-of-life care. The National Consensus Project clinical practice guidelines for quality palliative care list regular family meetings among the recommended practices for excellent communication during end-of-life care, but do not provide specific guidance on how and when to provide such meetings. Our findings provide a theoretical model that can inform the design of a family meeting to address family members' needs for meaningful and contextualized information, validation of their important contributions to care, and preparation for the patient's death.
The process of palliative sedation as viewed by physicians and nurses working in palliative care in Brazil
- Vívian Marina Calixto Damasceno Spineli, Andrea Yamaguchi Kurashima, Maria Gaby Rivero De Gutiérrez
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- 31 October 2014, pp. 1293-1299
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Objective:
Our aim was to describe the process of palliative sedation from the point of view of physicians and nurses working in palliative care in Brazil.
Method:Ours was a descriptive study conducted between May and December of 2011, with purposeful snowball sampling of 32 physicians and 29 nurses working in facilities in Brazil that have adopted the practice of palliative care.
Results:The symptoms prioritized for an indication of palliative sedation were dyspnea, delirium, and pain. Some 65.6% of respondents believed that the survival time of a patient in the final phase was not a determining factor for the indication of this measure, and that the patient, family, and healthcare team should participate in the decision-making process. For 42.6% of these professionals, the opinion of the family was the main barrier to an indication of this therapy.
Significance of results:The opinion of the physicians and nurses who participated in this study converged with the principal national and international guidelines on palliative sedation. However, even though it is a therapy that has been adopted in palliative care, it remains a controversial practice.
Efficacy of corticosteroids for cancer-related fatigue: A pilot randomized placebo-controlled trial of advanced cancer patients
- Kenji Eguchi, Michitaka Honda, Tatusji Kataoka, Taketo Mukouyama, Satoru Tsuneto, Junichi Sakamoto, Koji Oba, Shigetoyo Saji
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- 05 November 2014, pp. 1301-1308
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Objective:
Cancer-related fatigue (CRF) is a common and one of the most important issues in palliative medicine, and it has been demonstrated to have a significant impact on patient quality of life (QoL). The present pilot randomized controlled study evaluated the efficacy and toxicity of methylprednisolone (MP) for CRF in advanced cancer patients.
Method:Our study was planned as a randomized, double-blind, multicenter, placebo-controlled trial. Patients were randomly assigned to an MP group, who received 32 mg/day of MP orally for 7 days, and a placebo group. The primary endpoint was an improvement in visual analog scale (VAS) score for fatigue from baseline to day 7. The secondary endpoints were improvements in appetite loss and QoL as well as evaluating the safety of corticosteroids as palliative therapy.
Results:It was not possible to complete patient registration. In total, 35 patients were randomly assigned to an MP group (n = 18) and a placebo group (n = 17). The mean changes in VAS score for fatigue were –9.06 in the placebo group and –1.56 in the MP group, and for appetite loss –6.44 in the placebo group and –8.06 in the MP group. In addition, there was no evidence that methylprednisolone improved appetite loss or QoL compared to placebo. The incidence of adverse effects was not greater in the MP group.
Significant of Result:We conclude that our sample size was too small to prove the efficacy of methylprednisolone in improving fatigue. Our results were reported as a pilot study performed to support a subsequent larger trial.
Quality of life changes and intensive care preferences in terminal cancer patients
- In Cheol Hwang, Bhumsuk Keam, Young Ho Yun, Hong Yup Ahn, Young-Ae Kim
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- 07 November 2014, pp. 1309-1316
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Objective:
There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL).
Method:A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep–accept group, (2) the keep–reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference.
Results:The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care.
Significance of results:The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.
Understanding the experiences of Mandarin-speaking patients diagnosed with life-threatening cancer in Australia
- Yung-Chih Chiang, Anna Collins, Prem Chopra, Ti Lu, Eng-Seong Tan, Jeremy W. Couper
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- 10 November 2014, pp. 1317-1323
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Objective:
People from ethnic minority groups who receive cancer care outside their country of origin may experience poor survival and psychological outcomes relative to that nation's majority groups. This exploratory qualitative study aimed to understand the experience of a large minority group of Mandarin-speaking cancer patients (MSCPs) after diagnosis and treatment of their cancer in Australia, with a view to delineate if cultural or linguistic factors affected the quality of care provided.
Method:We employed an exploratory qualitative design involving interviews with 22 MSCPs who were treated during 2009 at the Peter MacCallum Cancer Centre (PMCC) in Melbourne, Australia. Participants were interviewed by a bilingual psychiatrist, audiotaped, transcribed in Mandarin, and then translated into English before being subjected to thematic analysis by two independent researchers.
Results:MSCPs experienced notable challenges as a result of both language difficulties and differing cultural approaches, which often limited their understanding of their disease and impeded their ability to access quality care and adequate support. The results call for Australia and other Western nations with increasingly diverse populations to consider how cancer care can be modified to better support people from minority groups to effectively cope with their diagnosis and treatment.
Significance of results:This study raises several suggestions for service improvement, including the development of bilingual communication aids, improved educational opportunities for clinical staff to aid their mastery of cultural issues and effective interpreter consultations, and improved access to supportive services offering culturally specific strategies.
Overlooked and underserved: Widowed fathers with dependent-age children
- Justin M. Yopp, Eliza M. Park, Teresa Edwards, Allison Deal, Donald L. Rosenstein
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- Published online by Cambridge University Press:
- 11 November 2014, pp. 1325-1334
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Objective:
Widowed fathers and their children are at heightened risk for poor coping and maladaptive psychosocial outcomes. This exploratory study is the first to explicitly examine the psychological characteristics of this population of fathers.
Method:Some 259 fathers (mean age = 46.81; 90% Caucasian) with dependent-age children and whose wives had died from cancer within the previous five years completed a web-based survey that consisted of demographic questions, the Center for Epidemiologic Studies Depression Scale (CES–D), the Texas Inventory of Grief–Revised (TRIG–R), the Psychological Adaptation Scale (PAS), the Kansas Parental Satisfaction Scale (KPSS), and items assessing perceived parental efficacy.
Results:Fathers were found to have elevated depressive (CES–D mean = 22.6) and grief (TRIG–R mean = 70.3) symptomatology, low adaptation (PAS mean = 3.2), and high levels of stress related to their parenting role. They reported being satisfied with their parenting (KPSS mean = 15.8) and having met their own parental expectations. Multivariate analyses revealed an association between father's age and depression (p = <0.01), with younger fathers reporting greater depressive symptoms. Psychological adaptation was positively correlated with being in a romantic relationship (p = 0.02) and age of oldest child (p = 0.02).
Significance of results:The results of our exploratory study suggest that, while widowed fathers perceive themselves as meeting their parental responsibilities, it comes at a substantial psychological cost, with particularly high stress related to being a sole parent. These findings may help guide interventions for this neglected population and underscore the importance of developing targeted therapies and research protocols to address their needs.
Assessment of spiritual suffering in the cancer context: A systematic literature review
- Megan Best, Lynley Aldridge, Phyllis Butow, Ian Olver, Melanie Price, Fleur Webster
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- 11 November 2014, pp. 1335-1361
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Objective:
An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer.
Method:A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared.
Results:A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component.
Significance of Results:Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness.