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Abstract Background/Objective Bereaved family surrogates from intensive care units (ICU) are at risk of comorbid anxiety, depression, and post-traumatic stress disorder (PTSD), but the temporal reciprocal relationships among them have only been examined once among veterans. This study aimed to longitudinally investigate these never-before-examined temporal reciprocal relationships for ICU family members over their first two bereavement years. Methods In this prospective, longitudinal, observational study, symptoms of anxiety, depression, and PTSD were assessed among 321 family surrogates of ICU decedents from 2 academically affiliated hospitals in Taiwan by the anxiety and depression subscales of the Hospital Anxiety and Depression Scale, and the Impact of Event Scale-Revised, respectively at 1, 3, 6, 13, 18, and 24 months postloss. Cross-lagged panel modeling was conducted to longitudinally examine the temporal reciprocal relationships among anxiety, depression, and PTSD. Results Examined psychological-distress levels were markedly stable over the first 2 bereavement years: autoregressive coefficients for symptoms of anxiety, depression, and PTSD were 0.585–0.770, 0.546–0.780, and 0.440–0.780, respectively. Cross-lag coefficients showed depressive symptoms predicted PTSD symptoms in the first bereavement year, whereas PTSD symptoms predicted depressive symptoms in the second bereavement year. Anxiety symptoms predicted symptoms of depression and PTSD at 13 and 24 months postloss, whereas depressive symptoms predicted anxiety symptoms at 3 and 6 months postloss while PTSD symptoms predicted anxiety symptoms during the second bereavement year. Conclusions Different patterns of temporal relationships among symptoms of anxiety, depression, and PTSD over the first 2 bereavement years present important opportunities to target symptoms of specific psychological distress at different points during bereavement to prevent the onset, exacerbation, or maintenance of subsequent psychological distress.

Abstract Background Bereaved ICU family surrogates are at risk of comorbid prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. Knowledge about temporal relationships between PGD, PTSD, and depression is limited by a lack of relevant studies and diverse or inappropriate assessment time frames given the duration criterion for PGD. We aimed to determine the temporal reciprocal relationships between PGD, PTSD, and depressive symptoms among ICU decedents’ family surrogates during their first 2 bereavement years with an assessment time frame reflecting the PGD duration criterion. Methods This prospective, longitudinal, observational study examined PGD, PTSD, and depressive symptoms among 303 family surrogates of ICU decedents from two academic hospitals using 11 items of the Prolonged Grief Disorder-13, the Impact of Event Scale—Revised, and the depression subscale of the Hospital Anxiety and Depression Scale, respectively, at 6, 13, 18, and 24 months post-loss. Cross-lagged panel modeling was conducted: autoregressive coefficients indicate variable stability, and cross-lagged coefficients indicate the strength of reciprocal relationships among variables between time points. Results Symptoms (autoregressive coefficients) of PGD (0.570–0.673), PTSD (0.375–0.687), and depression (0.591–0.655) were stable over time. Cross-lagged standardized coefficients showed that depressive symptoms measured at 6 months post-loss predicted subsequent symptoms of PGD (0.146) and PTSD (0.208) at 13 months post-loss. PGD symptoms did not predict depressive symptoms. PTSD symptoms predicted subsequent depressive symptoms in the second bereavement year (0.175–0.278). PGD symptoms consistently predicted subsequent PTSD symptoms in the first 2 bereavement years (0.180–0.263), whereas PTSD symptoms predicted subsequent PGD symptoms in the second bereavement year only (0.190–0.214). PGD and PTSD symptoms are bidirectionally related in the second bereavement year. Conclusions PGD, PTSD, and depressive symptoms can persist for 2 bereavement years. Higher PGD symptoms at 6 months post-loss contributed to the exacerbation of PTSD symptoms over time, whereas long-lasting PTSD symptoms were associated with prolonged depression and PGD symptoms beyond the first bereavement year. Identification and alleviation of depression and PGD symptoms as early as 6 months post-loss enables bereaved surrogates to grieve effectively and avoid the evolution of those symptoms into long-lasting PGD, PTSD, and depression.

Abstract Background/purpose The purpose of this secondary-analysis study was to identify never-before-examined factors associated with distinct depressive-symptom trajectories among family caregivers from end-of-life caregiving through the first 2 bereavement years. Participants/methods Participants (N=661) were family caregivers who provided end-of-life caregiving for terminally ill cancer patients. Multinomial logistic regressions were conducted to identify modifiable factors associated with caregivers’ seven previously identified depressive-symptom trajectories: minimal-impact resilience, recovery, preloss-depressive-only, delayed symptomatic, relief, prolonged symptomatic, and chronically persistent distressed. Drawing from the stress-appraisal-coping model, modifiable time-varying factors associated with distinct depressive-symptom trajectories were examined in three domains: (1) stressors, (2) stress appraisal, and (3) available resources (internal coping capacity and external social support). Results Profound objective caregiving demands were associated with caregivers’ increased likelihood of belonging to more distressing depressive-symptom trajectories than to the minimal-impact-resilience trajectory. But, stronger negative appraisal of end-of-life caregiving increased odds of caregiver membership in preloss-depressive-only and relief trajectories over the recovery, delayed, and prolonged-symptomatic trajectories. Stronger internal coping capacity and perceived social support buffered the tremendous stress of end-of-life caregiving and permanent loss of a relative, as evidenced by higher odds of being in the minimal-impact-resilience and recovery trajectories. Conclusion Family caregivers’ distinct depressive-symptom trajectories were linked to their preloss caregiving demands, appraisal of negative caregiving impact, personal coping capacity, and perceived social support. Our results highlight actionable opportunities to improve end-of-life-care quality by boosting family caregivers’ coping capacity and enhancing their social support to help them adequately manage daily caregiving loads/burdens thus relieving the emotional toll before patient death and throughout bereavement.

Abstract Background/objective Bereaved ICU family surrogates’ psychological distress, e.g., anxiety, depression, and post-traumatic stress disorder (PTSD), is usually examined independently, despite the well-recognized comorbidity of these symptoms. Furthermore, the few studies exploring impact of psychological distress on development of prolonged grief disorder (PGD) did not consider the dynamic impact of symptom evolution. We identified surrogates’ distinct patterns/states of comorbid psychological distress and their evolution over the first 3 months of bereavement and evaluated their associations with PGD at 6-month postloss. Methods A longitudinal observational study was conducted on 319 bereaved surrogates. Symptoms of anxiety, depression, PTSD, and PGD were measured by the anxiety and depression subscales of the Hospital Anxiety and Depression Scale, Impact of Event Scale-Revised scale, and the PGD-13, respectively. Distinct psychological-distress states and their evolution were examined by latent transition analysis. Association between psychological-distress states and PGD symptoms was examined by logistic regression. Results Three distinct comorbid psychological-distress states (prevalence) were initially identified: no distress (56.3%), severe-depressive/borderline-anxiety distress (30.5%), and severe-anxiety/depressive/PTSD distress (13.3%). Except for those in the stable no-distress state, surrogates tended to regress to states of less psychological distress at the subsequent assessment. The proportion of participants in each psychological-distress state changed to no distress (76.8%), severe-depressive/borderline-anxiety distress (18.6%), and severe-anxiety/depressive/PTSD distress (4.6%) at 3-month postloss. Surrogates in the severe-depressive/borderline-anxiety distress and severe-anxiety/depressive/PTSD-distress state at 3-month postloss were more likely to develop PGD at 6-month postloss (OR [95%] = 14.58 [1.48, 143.54] and 104.50 [10.45, 1044.66], respectively). Conclusions A minority of family surrogates of ICU decedents suffered comorbid severe-depressive/borderline-anxiety distress and severe-anxiety/depressive/PTSD symptoms during early bereavement, but they were more likely to progress into PGD at 6-month postloss.

Abstract Background Cancer patients may develop prognostic awareness (PA) heterogeneously, but predictors of PA‐transition patterns have never been studied. We aimed to identify transition patterns of PA and their associated factors during cancer patients’ last 6 months. Methods For this secondary‐analysis study, PA was assessed among 334 cancer patients when they were first diagnosed as terminally ill and monthly till they died. PA was categorized into four states: (a) unknown and not wanting to know; (b) unknown but wanting to know; (c) inaccurate awareness; and (d) accurate awareness. The first and last PA states estimated by hidden Markov modeling were examined to identify their change patterns. Factors associated with distinct PA‐transition patterns were determined by multinomial logistic regressions focused on modifiable time‐varying variables assessed in the wave before the last PA assessment to ensure a clear time sequence for associating with PA‐transition patterns. Results Four PA‐transition patterns were identified: maintaining accurate PA (56.3%), gaining accurate PA (20.4%), heterogeneous PA (7.8%), and still avoiding PA (15.6%). Reported physician‐prognostic disclosure increased the likelihood of belonging to the maintaining‐accurate‐PA group than to other groups. Greater symptom distress predisposed patients to be in the still‐avoiding‐PA than the heterogeneous PA group. Patients with higher functional dependence and more anxiety/depressive symptoms were more and less likely to be in the heterogeneous PA group and in the still‐avoiding‐PA group, respectively, than in the maintaining‐ and gaining‐accurate PA groups. Conclusions Cancer patients heterogeneously experienced PA‐transition patterns over their last 6 months. Physicians’ prognostic disclosure, and patients’ symptom distress, functional dependence, and anxiety/depressive symptoms, all modifiable by high‐quality end‐of‐life care, were associated with distinct PA‐transition patterns.

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

Background: No systematic meta-analysis is available on the prevalence of cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. Aim: To examine the prevalence of advanced/terminal cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. Design: Systematic review and meta-analysis. Methods: MEDLINE, Embase, The Cochrane Library, CINAHL, and PsycINFO were systematically searched on accurate prognostic awareness in adult patients with advanced/terminal cancer (1990-2014). Pooled prevalences were calculated for accurate prognostic awareness by a random-effects model. Differences in weighted estimates of accurate prognostic awareness were compared by meta-regression. Results: In total, 34 articles were retrieved for systematic review and meta-analysis. At best, only about half of advanced/terminal cancer patients accurately understood their prognosis (49.1%; 95% confidence interval: 42.7%-55.5%; range: 5.4%-85.7%). Accurate prognostic awareness was independent of service received and publication year, but highest in Australia, followed by East Asia, North America, and southern Europe and the United Kingdom (67.7%, 60.7%, 52.8%, and 36.0%, respectively; p = 0.019). Accurate prognostic awareness was higher by clinician assessment than by patient report (63.2% vs 44.5%, p < 0.001). Conclusion: Less than half of advanced/terminal cancer patients accurately understood their prognosis, with significant variations by region and assessment method. Healthcare professionals should thoroughly assess advanced/terminal cancer patients preferences for prognostic information and engage them in prognostic discussion early in the cancer trajectory, thus facilitating their accurate prognostic awareness and the quality of end-of-life care decision-making. [ABSTRACT FROM AUTHOR]

Background/Objectives: Surgery offers the potential to relieve symptoms for patients with cancer at the end of life (EOL) but at significant physiological and economic costs. However, the characteristics and correlates of surgery in last month of life (EOL surgery) of patients with cancer have not been comprehensively explored. This population-based study characterized EOL surgery use and identified its correlates. Methods: This retrospective cohort study examined administrative data among 339,546 Taiwanese cancer decedents, 2001 to 2010. We classified procedures according to their likely intent. Results: Approximately 1 in 10 (11.44%, range: 11.08%-11.86%) patients underwent EOL surgery with an increasing utilization over time. The intention for EOL surgery was primarily palliative, followed by cancer-directed, nonmalignancy-directed, and diagnostic. EOL surgery for palliative intent increased whereas other intents decreased significantly over time. EOL surgery was more likely among those who were male, younger, and married; not diagnosed with hepatic-pancreatic or lung cancers; had no comorbidity or documented metastatic codes; and survived less than 1 year from diagnosis. The likelihood of EOL surgery use was higher for patients who received care in a teaching hospital with more acute care hospital beds and higher EOL care intensity. Conclusions: Rates of EOL surgery are lower in Taiwan than those reported in the United States. The increasing use of EOL surgery in Taiwan is primarily for palliative intent. Appropriateness of EOL surgery should be carefully evaluated to avoid underutilizing potentially beneficial, palliative-intent surgery and overutilizing cancer-directed and other surgical procedures, especially for physicians working in hospitals with abundant health care resources and a tendency to treat at-risk patients with cancer aggressively. [ABSTRACT FROM AUTHOR]

Context: The stability of life-sustaining treatment (LST) preferences at end of life (EOL) has been established. However, few studies have assessed preferences more than two times. Furthermore, associations of LST preferences with modifiable variables of accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms have been investigated in cross-sectional studies only.Objectives: To explore longitudinal changes in LST preferences and their associations with accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms in terminally ill cancer patients' last year.Methods: LST preferences (cardiopulmonary resuscitation, intensive care unit [ICU] care, intubation, and mechanical ventilation) were measured approximately every two weeks. Changes in LST preferences and their associations with independent variables were examined by hierarchical generalized linear modeling with logistic regression.Results: Participants (n = 249) predominantly rejected cardiopulmonary resuscitation, ICU care, intubation, and mechanical ventilation at EOL without significant changes as death approached. Patients with inaccurate prognostic awareness were significantly more likely than those with accurate understanding to prefer ICU care, intubation, and mechanical ventilation than to reject these LSTs. Patients with more severe depressive symptoms were less likely to prefer ICU care and to be undecided about wanting ICU care and mechanical ventilation than to reject such LSTs. LST preferences were not associated with physician-patient EOL care discussions, which were rare in our sample.Conclusion: LST preferences are stable in cancer patients' last year. Facilitating accurate prognostic awareness and providing adequate psychological support may counteract the increasing trend for aggressive EOL care and minimize emotional distress during EOL care decisions. [ABSTRACT FROM AUTHOR]

The article discusses a study to determine the level of care available for end-of-life patients at intensive care units (ICU) in Taiwan. Researchers looked into data for 204,850 cancer patients between 2001 to 2006, looking into factors such as their demographics, disease, doctors and resources available, and regional levels. They found that ICU care for patients' last month in life did not differ much between 2001 to 2006, that more males around 65 years of age used them, and that those with cancer were less likely to use ICU facilities near death.

Abstract Goals of work  Since emergency departments (ED) are designed to manage people with urgent and life-threatening conditions, cancer patients presenting with pain may not receive the appropriate care in the ED. The purpose of this study was to identify the incidence and factors related to ED visits by cancer patients with pain complaints. Materials and methods  Medical charts selected by stratified random sampling were retrospectively reviewed to obtain information about ED visits by cancer patients during a 1-year period. The sample included 1,179 ED visits by 1,026 cancer patients. Main results  Pain was the most common reason for ED visits by cancer patients. The incidence of ED visits for pain as a presenting problem was 27.8%. The 72-h ED return-visit rate was 8.2% for cancer patients who visited the ED with pain complaints. Patients with gastrointestinal and genitourinary cancers were more likely to visit the ED for pain. Patients who had received radiation therapy were less likely to visit the ED for pain. Conclusion  Effective cancer pain management programs need to be developed and tested to reduce ED visits by cancer patients with pain. More research is needed to explore why cancer patients with pain visit the ED. [ABSTRACT FROM AUTHOR]

Background. Oncologists play a significant role in cancer care throughout the cancer trajectory and have traditionally emphasized underuse of procedures/treatments with well-established effectiveness as the source of poor care quality with little attention to overusing end-of-life (EOL) care. The purpose of this populationbased study was to compare the quality of EOL care between medical oncologists and other physician specialists. Methods. This retrospective cohort study compared indicators of poor quality EOL care by examining administrative data for 204,850 Taiwanese cancer decedents in 2001-2006. Results. Taiwanese cancer patients whose primary physician was a medical oncologist were significantly more likely than patients of other physician specialists to receive chemotherapy and to spend >14 days in a hospital in the last month of life. However, they were significantly less likely than patients of other physician specialists to visit the emergency room (ER) more than once and to use intensive care unit (ICU) care, cardiopulmonary resuscitation (CPR), intubation, and mechanical ventilation in the last month of life. Conclusion. The quality of EOL cancer care in Taiwan varied significantly by physician specialty. Cancer decedents cared for by medical oncologists were more likely to receive chemotherapy and prolonged hospitalization but less likely to have multiple ER visits, ICU care, or undergo CPR, intubation, or mechanical ventilation in the last month of life than patients of other physician specialists. [ABSTRACT FROM AUTHOR]

Objectives: The main goal of end-of-life care is to achieve the best quality of life (QOL) for patients. The purpose of this study was to investigate the impact of (1) the patients' awareness of their prognosis, (2) the extent of patient–family caregiver congruence on the preferences for end-of-life care options, and (3) the perceived caregiving burden of family caregivers when they provide end-of-life care to their dying relative, on the QOL for terminally ill cancer patients in Taiwan. Methods: A total of 1108 dyads of patient–family caregiver from 24 hospitals throughout Taiwan were one-time surveyed. Predictors of the QOL were identified by multiple regression analysis. Results: Controlling for the effects of age, financial status, and symptom distress, a novel finding of this study was that the patient awareness of prognosis, patient–family caregiver congruence on the preferred place of death, and the subjective family caregiving burden had a significant impact on the QOL of Taiwanese terminally ill cancer patients. Conclusions: QOL is not only related to the unavoidable decline in physical condition and daily functioning of the dying patient but is also related to domains that, as death approaches, have the potential to show improvement through the efforts of health-care professionals, such as presenting prognostic information to optimize the patients' understanding and assists them with psychological adjustments, facilitating patient–family caregiver congruence on the end-of-life care decision regarding the place of death and lightening the caregiving burden of family caregivers. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Family caregiving is common and important in Taiwanese culture. However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC’s QOL has been explored in western countries—primarily with small sample sizes or short-term follow-ups—but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies. A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs’ QOL were identified by a generalized estimation equation (GEE). Caregiving for a terminally ill cancer patient extracts a toll from a FC’s QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC’s QOL reflects the patient’s increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient’s death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC. Taiwanese FCs’ QOL deteriorated significantly as the patient’s death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the ‘appraisals of caregiving’ are more salient in determining a FC’s QOL than the patient’s/FC’s characteristics and the caregiving demands. [ABSTRACT FROM AUTHOR]

Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. However, there is scant information regarding the impact of caregiving on Chinese/Taiwanese families. The purpose of this study was aimed at identifying those family caregivers of Taiwanese terminally ill cancer patients who are at risk of experiencing depressive distress from the following three categories of predisposing factors: 1) contextual factors; 2) stressors; and 3) appraisal of the caregiving situation. Of the 170 Taiwanese family caregivers of terminally ill cancer patients that participated in this survey, 129 (75.9%) were at an extraordinarily high risk of being distressed because of depressive symptoms (CES-D>15). Results indicated that family caregivers were vulnerable to clinically depressive distress if they were the patient's spouse (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.19-7.01), or evaluated caregiving as imposing a greater negative impact on their own health (AOR: 1.27; 95% CI: 1.09-1.47). In contrast, if family caregivers felt very confident in their knowledge of how to take care of the patient at home (AOR: 0.35; 95% CI: 0.15-0.81), or were sufficiently aware of the patient's thoughts and feelings about disease experiences and symptoms (AOR: 0.47; 95% CI: 0.25-0.88), they were less likely to suffer from depressive distress. These finding have significant clinical implications when they are put into the context of Confucian cultures which place great emphasis on filial piety and familism. Interventions and policy should be developed to target spousal caregivers to enhance their confidence in caregiving and understanding of the patient's disease experiences. This will reduce the negative caregiving impact on the caregiver's health, which in turn may prevent the development of depressive distress among family caregivers. [ABSTRACT FROM AUTHOR]

The use of family caregivers to report patients’ dying experiences has been suggested as a way of resolving the problem of non-response bias and missing data in end-of-life research. There is a dearth of information in the literature about the predictors of the extent of agreement for quality of life (QOL) assessments between patients and family informants outside of Western countries. In addition, to date there has been little progress made in deciphering meaningful influencing factors on the levels of agreement between patient and family QOL assessments. The purpose of this study was to identify the impact of the demographics and disease characteristics of patients and families, relationships of the patient to family caregiver, and caregiving burden on the extent of agreement for QOL assessments between Taiwanese terminally ill cancer patients and their family caregivers. Results from assessments by 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that the extent of agreement between patient and family assessments of patient QOL was negatively influenced by the caregiving burden (amount of care needed and the impact of caregiving on caregiver’s health), positively influenced by the patient’s poorer health status, and there were a mixed effect of the demographics and the relationship between the patient and the family. Providing clinical care tailored at empowering families and aimed at reducing their unmet caregiving needs may improve family caregivers’ abilities to assess patient QOL sensitively. [ABSTRACT FROM AUTHOR]

Considering the emphasis of nonmaleficence and beneficence and the relative power of family, there is a well-recognized suggestion that, in Asian culture, informing cancer patients about their diagnosis and prognosis should be modified according to the family's opinion. However, up until now, except in Japan, the argument that cancer patients from an Asian culture have different preferences about being informed of their diagnosis and prognosis has not been demonstrated by evidence-based studies especially by directly exploring cancer patients' preferences. The purpose of this study was to describe Taiwanese cancer patients' knowledge and experiences of being informed of their diagnosis and prognosis. Preferences of information from health-care professionals and attitudes toward disclosing information to family and even respecting family's opinions not to disclose the life-threatening diagnosis and prognosis to patients have also been explored from the patient's point of views. Evidence from this study demonstrated that Taiwanese cancer patients' information needs are substantial. However, the common practice of nondisclosure of prognosis and detailed disease-related information by health-care professionals continues. Cancer patients in Taiwan expressed a strong preference for health-care professionals to inform them of disease-related information before disclosing information to their family members. Health-care professionals need to consider and respect cancer patients' views rather than routinely taking the family's opinions into consideration first in the event of disagreement. Copyright © 2003 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Ovarian cancer represents about 4% of all cancers in women and is the fifth leading cause of death in the United States each year. Ovarian cancer is associated with uncertainty, anxiety, and depression. Many women present with advanced disease at diagnosis and are faced with aggressive surgical and medical protocols to treat them. To meet the needs of women with ovarian cancer, the effects of their physical problems on psychological adjustment must be identified. Health care professionals must closely monitor women with ovarian cancer to identify those who may require ongoing psychological care or psychiatric intervention. This article presents an overview of ovarian cancer, focusing on the psychological effects, and an intervention by oncology nurse specialists to address both the physical and emotional distress that accompanies ovarian cancer. The importance of screening for psychological distress is emphasized. [ABSTRACT FROM AUTHOR]

Longitudinal research has been recommended as the most appropriate research design to ensure the validity of quality of life assessments. However, high attrition and non-random missing data in quality of life studies for terminal cancer patients raise questions about generalizability of the study, and at worst they may jeopardize interpretation of the results. Appropriate time frames for eliciting information directly from terminal cancer patients can ensure the internal and external validity of quality of life research in end-of-life care, allow health care professionals to detect sensitively the effects of end-of-life care within the shortest intervention period, and make comparisons across studies possible. From a review of the literature, it is recommended that the appropriate time frame for interviewing terminal cancer patients about their quality of life be a weekly assessment schedule based on the following factors: (a) the median survival of terminal cancer patients enrolling in a hospice/palliative care program is approximately 30 days and there are substantial number of patients who die in each week; (b) at the final weeks of life, quality of life and symptoms of some terminal cancer patients change dramatically; and (c) the shortest intervention period that is likely to give a clinically significant effect of end-of-life care management is 1 week after the enrollment in end-of-life care. [ABSTRACT FROM AUTHOR]

Caring for an individual at the end of life contributes to psychological distress, physical disease, and increased mortality. The extent of the experienced stress does not depend solely on the demands of the situation. Psychological resources account for a larger part of the variances in caregiver outcomes. To investigate the unique contribution of personal resilience to the experience of depressive distress for family caregivers of Taiwanese terminally ill cancer patients. Stress-process model and Antonovsky's concept of sense of coherence. Cross-sectional survey. 194 caregivers were recruited by a convenience sampling strategy. Predisposing factors of depressive distress were categorized as: (a) caregiver characteristics; (b) demographics and disease-related variables of the patients; (c) objective caregiving loads; (d) subjective caregiving burden; (e) appraisal of the caregiving situation and confidence in caregiving; and (f) personal resources and personal resilience. Depressive distress was measured by the CES-D. Objective caregiving loads and subjective caregiving burden was measured by care tasks and levels of care and the Caregiver Reaction Assessment, respectively. Personal resilience of caregivers and confidence in caregiving was measured by the Sense of Coherence (SOC) Scale and the items developed by Teno et al (2001), respectively. Hierarchical multiple regression was conducted to determine contribution of each predisposing factor to experiencing depressive distress among caregivers following the aforementioned sequence. The scores on the CES-D ranged from 3 to 55 with a mean and standard deviation of 24.16 (11.07). A total of 73.7% of variance was explained by the final regression model. Results indicated that, except for objective caregiving loads, the other five categories of predisposing factors all contributed significantly to the variance of experiencing depressive distress among caregivers. In the final step of regression, SOC of caregivers increases explained variation in depressive symptoms by 17.3%. Conclusion: Taiwanese family caregivers of terminally ill cancer patients were at an extraordinarily high risk of experiencing depressive distress based on the high mean score of the CES-D. Development of interventions that enhance caregivers' SOC by assisting in promoting positive appraisal, finding meaning, and mobilizing resources to manage the caregiving situation is recommended. Funding Sources: National Health Research Institute. (NHRI-EX94-9406PC) [ABSTRACT FROM AUTHOR]

Background: Prognostic disclosure is a show of respect for patient autonomy. Only patients who are aware of their prognosis can participate in discussions about their medical condition and make decisions that meet their individual preferences. Despite the abundant literature on this topic, no systematic estimates of prognostic disclosure in cancer patients are available and relatively little research has focused on the impact of prognostic awareness and disclosure on cancer patients. Methods: The literature on prognostic awareness and disclosure in cancer patients was systematically reviewed and subjected to a meta-analysis. Results: The literature search retrieved 25 articles for meta-analysis. The pooled proportion of preferences for prognostic information and prognostic disclosure was calculated. Most cancer patients expressed a preference for prognostic disclosure [84.6%, 95% confidence interval (CI) 74.1%-91.4%)], but only about half were told their prognosis (49.3%, 95% CI 36.4%- 62.3%). These results indicate a gap between cancer patients’ preferences for prognostic disclosure and their actual receipt of prognosis. Cancer patients who are not told their prognosis may have several negative consequences, including inappropriate prognostic awareness, receiving futile treatment at the end of life, being unprepared for death, increased psychological and mental distress as well as social and spiritual suffering, and decreased quality of life. The discrepancy between patients’ preferred and actual prognostic disclosure is primarily due to physicians’ difficulty in revealing the prognosis; this difficulty stems from inaccurate estimates of prognosis, attitudes of beneficence and maintaining patients’ hope, lack of good communication skills, and not knowing patients’ preferences for prognostic information. Conclusions: In order to close the gap between patients’ preferences for prognostic disclosure and actual receipt of prognostic information, healthcare professionals should develop interventions to overcome the physicians’ difficulty in revealing prognosis, thus facilitating cancer patients’ awareness of prognosis and providing high quality end-of-life care.

Background/Purpose: To investigate the quality of care (QOC) for lung cancer in Taiwan, as measured by pattern of care (POC) variation. Methods: Based on core measures in the Taiwan Cancer Database (TCDB) registry, QOC for lung cancer was measured as variation in POC for 16 selected core measures for different hospital characteristics. Statistical significance in variation was evaluated by the χ2 test. Results: Among the 26 participating hospitals (one excluded as an outlier), 6624 cases of lung cancer were reported in 2004. Among the 16 core measures (6 in the diagnostic and 10 in the therapeutic domain), no significant variation in POC was noted in 12 in northern and non-northern hospitals. However, significant variation in POC was noted for most (5/6) of the core measures in the diagnostic domain for other hospital characteristics (large vs. small, medical center vs. regional hospital, public vs. private). Increasing utilization of tissue diagnosis, diagnostic computed tomography (CT), and CT or magnetic resonance imaging for staging advanced non-small cell lung cancer was noted in the four participating hospitals from 2002 to 2004. Conclusion: It is very likely that significant variation in QOC for lung cancer in Taiwan exists among different types but not locations of hospitals, at least in the diagnostic domain. The introduction of internal benchmarking (TCDB and core measures) was associated with some changes, at least in some diagnostic domains, which may lead to improvement in QOC for lung cancer in Taiwan.

Understanding the needs of cancer patients and their family is a vital step for designing cancer support program and providing need-sensitive supportive care for cancer patients and their family. Cancer is the leading cause of death for the past 24 years in Taiwan. The needs of Taiwanese cancer patients and their family along the cancer trajectory not yet fully explored. To better understand the need of Taiwanese adult cancer patients and their family along cancer trajectory, key-informant and cancer-patient-and-family focus groups were conducted. The philosophic underpinnings of this study are based on the belief that the assessment of needs for cancer care is best to be discovered through the cancer experience of the human beings with cancer and the caregiving experience of family and healthcare professionals. A purpose sample of 23 adult cancer patients, family members and cancer care professionals were recruited in Taipei city. The patient-family group included 10 patients with various cancers and having treatment experience, and two family caregivers. The key informant groups comprised one cancer patient, one family caregiver, and nine professionals, including medical oncologists, radiation oncologists, nurses, social workers, and one psychologist. Using content analysis, the main themes identified in focus groups of the qualitative study were: being treated as a human being, being able to have trust on professionals and gaining support, and keeping away from suffering, getting connected with resources, returning to community. Being as a human being was characterized as being informed, understood and accepted and having confidence. The needs to be connected with cancer care providers and cancer survivors both in clinic and in community were stressed. The results of this qualitative study have been used to develop cancer support programs and to network cancer resources and cancer care providers. Funding Sources: Funded by Department of Health, Taiwan, Republic of China [ABSTRACT FROM AUTHOR]