Objective: End-of-life cancer care imposes a heavy financial burden on patients, their families, and their health insurers. The aim of this study was to explore the 8-year (2004-2011) trends in health-care costs for Taiwanese cancer decedents in their last month of life and, specifically, to assess the association of these trends with hospice care.
Materials and Methods: We conducted a population-based longitudinal study and analyzed data from Taiwan's National Health Insurance Research Database. The data consisted of not only claims information - costs of hospitalization and outpatient department visits - but also the associated patient characteristics, catastrophic illness status, hospice patient designation, and insurance system exit date (the proxy for death).
Results: A total of 11,104 cancer decedents were enrolled, and 2144 (19.3%) of these patients received hospice care. The rate of hospice service use increased from 14.9% to 21.5% over 8 years. From 2004 to 2011, the mean health-care cost per day in the last month of life increased 8.2% (from US$93 ± $108 in 2004 to US$101 ± $110 in 2011; P = 0001). We compared three groups of patients who received hospice care for more than 1 month (long-H group), received hospice care for 30 days or less (short-H group), and did not receive hospice care (non-H group). Compared to non-H group, long-H group had a significantly lower mean health-care cost per day during their last month of life (US$85.7 ± 57.3 vs. US$102.4 ± 120) (P < 0001). Furthermore, compared to short-H and non-H groups, patients in the long-H group had lower probabilities of receiving chemotherapy and visiting the emergency department more than once. They also incurred lower health-care costs (US$77.1 ± 58.1 vs. US$92.2 ± 56.0 for short-H group and US$102.4 ± 120 for non-H group) (P < 0001).
Conclusion: Health-care costs in the last month of life are increasing over time in Taiwan. Nonetheless, health-care costs for patients receiving hospice can be as much as 16.3% lower than patients not receiving hospice care. Patients receiving hospice care for more than 30 days also had lower health-care costs than those receiving care for <30 days.
Background: Patients in palliative care are the population cohort that most frequently develop pressure injuries, severely impacting their quality of life. Data from prospective studies on the prevalence and incidence of pressure injuries in hospices are lacking.
Aim: To describe the point prevalence and cumulative incidence of pressure injuries in patients admitted to residential hospices, and to analyze their predictive factors over time.
Design: Multicentre prospective longitudinal observational study.
Setting/participants: Adult patients (n = 992) enrolled in 13 Italian residential hospices, with a minimum sample of 280 for each macro-region (North, center, South/Islands).
Methods: Assessments including the Karnofsky Performance Status, Braden, Edmonton Symptom Assessment System Revised scales and pressure injury staging according to National Pressure Ulcer Advisory Panel were conducted at least every four days, from admission to patients’ death/discharge.
Results: The 7,967 observations recorded provided prevalence and incidence rates of 34.1% and 26.5%, respectively. The logistic regression model showed non-cancer disease (OR = 2.39, 95%CI = 1.65–3.47), age >80 (OR = 2.01, 95%CI = 1.49–2.71), Braden score ‘at risk’ (OR = 1.92, 95%CI = 1.17–3.14), urinary catheter (OR = 1.96, 95%CI = 1.40–2.75), drowsiness (OR = 1.41, 95%CI = 1.02–1.95) and artificial nutrition (OR = 1.47, 95%CI = 1.01–2.14) as the variables associated with pressure injury at admission. The generalized estimating equations models, built on the timeframes for observation groups, revealed male gender (OR = 1.68, 95%CI = 1.01–2.79) and Braden score ‘at risk’ (OR = 4.45, 95%CI = 1.74–11.34) as predictive factors of a new pressure injury developed up to three weeks before a patient's death, while in the last ten days of life these predictors were replaced by diagnosis of cancer (OR = 1.80, 95%CI = 1.11–2.91), worsening pain (OR = 1.65, 95%CI = 1.10–2.49), drowsiness (OR = 1.79, 95%CI = 1.25–2.57) and dyspnea (OR = 1.48, 95%CI = 1.01–2.18).
Conclusions: The high incidence and prevalence of pressure injuries confirm the importance of palliative care nurses continuously focusing on prevention and management strategies. In the last three weeks of a patient's life, the predictive power of the Braden scale for a new pressure injury is not confirmed, throwing doubt on the effectiveness of aimed interventions at modifying risk factors. Along the different disease trajectories, pressure injuries developed during the instability/worsening phases of illness, occurring before hospice admission for non-cancer patients and in the end-of-life phase for cancer patients. Despite continuous provision of appropriate interventions, most of the new pressure injuries were detected during the last ten days of a patient's’ life and assessed as 'unavoidable'. These results are crucial to guiding palliative care nursing plans during the different phases of illness, and to predicting care needs, possible management strategies (‘wound management’ vs. ‘wound palliation’), and resource utilization.
Background: This study compares a longitudinal population-based sample of spouses bereaved by suicide and those bereaved by other sudden deaths to determine if suicide-bereaved spouses (SBS) experience greater rates of physician-diagnosed mental disorders.
Methods: First, married individuals whose spouse died by suicide, sudden natural death (SND) and unintentional injury (UI) were compared to non-bereaved matched cohorts to determine if there were differences in mental disorder rates between bereavement groups and non-bereaved matches. Second, SBS (n = 365), spouses bereaved by SND (n = 1000), and spouses bereaved by UI (n = 270), were compared using inverse probability treatment weighting and generalized estimating equations to calculate relative rates of mental disorders 5 years before/after death.
Outcomes: All bereaved cohorts had higher rates of mental disorders compared to non-bereaved cohorts. SBS had the greatest rate of depression post-bereavement (50·96%), followed by UI (38·52%) and SND (33·70%) spouses. When comparing bereavement cohorts, a significant group-by-time interaction (P = 0·047) revealed the rate change for depression was significantly different between suicide and UI-bereaved spouses, with SBS having higher rates of depression before bereavement. SBS had increased rates of any mental disorder both pre (ARR = 1·35, 95% CI = 1·03-1·18, P<·05) and post spousal death (ARR = 1·24, 95% CI = 1·03-1·45, P<·05) when compared to UI spouses signifying pre-existing mental disorders. Post-bereavement, SBS had greater rates of depression only when compared to SND-bereaved spouses (ARR = 1·31, 95% CI = 1·10-1·55, P<·01). Interpretation: SBS have the greatest rates of depression and any mental disorder before the death of their spouse, suggesting suicide bereavement may be unique. Sudden spousal bereavement is a vulnerable time for mental disorders.
In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients' needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.
Cause of death is an important outcome in end-of-life (EOL) research. However, difficulties in assigning cause of death have been well documented. We compared causes of death in national death registrations with those reported in EOL interviews. Data were from The Irish Longitudinal Study on Ageing (TILDA), a nationally representative sample of community-dwelling adults aged 50 years and older. The kappa agreement statistic was estimated to assess the level of agreement between two methods: cause of death reported in EOL interviews and those recorded in official death registrations. There was moderate agreement between underlying cause of death recorded on death certificates and those reported in EOL interviews. Discrepancies in reporting in EOL interviews were systematic with better agreement found among younger decedents and where the EOL informant was the decedents' partner/spouse. We have shown that EOL interviews may have limited utility if the main goal is to understand the predictors and antecedents of different causes of death.
Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers’ support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely.
Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life.
Design: Longitudinal qualitative study with thematic analysis.
Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention.
Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the ‘right’ people to implement the intervention and (3) practical implementation challenges.
Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status.
Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences.
Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences.
Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity.
Objectives: Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.
Methods: A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.
Results: In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D).
Conclusions: Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.
Context: Clinicians often worry that patients' recognition of the terminal nature of their illness may impair psychological well-being.
Objectives: To determine if such recognition was associated with decrements to psychological well-being that persisted over time.
Methods: About 87 patients with advanced cancer, with an oncologist-expected life expectancy of less than six months, were assessed before and after an oncology visit to discuss cancer restaging scan results and again at follow-up (median time between assessments, approximately six weeks). Prognostic understanding (PU) was assessed at previsit and postvisit, and a change score was computed. Psychological well-being was assessed at pre, post, and follow-up, and two change scores were computed (post minus pre; follow-up minus post).
Results: Changes toward more accurate PU was associated with a corresponding initial decline in psychological well-being (r = -0.33; P < 0.01) but thereafter was associated with subsequent improvements (r = 0.40; P < 0.001). This pattern remained controlling for potential confounds. Patients showed different patterns of psychological well-being change (F = 3.07, P = 0.05; F = 6.54, P < 0.01): among patients with improved PU accuracy, well-being initially decreased but subsequently recovered; by contrast, among patients with stable PU accuracy, well-being remained relatively unchanged, and among patients with decrements in PU accuracy, well-being initially improved but subsequently declined.
Conclusion: Improved PU may be associated with initial decrements in psychological well-being, followed by patients rebounding to baseline levels. Concerns about lasting psychological harm may not need to be a deterrent to having prognostic discussions with patients.
Background: Understanding the factors that affect the congruence between preferred and actual place of death may help providers offer clients customized end-of-life care settings. Little is known about this congruence for cancer patients in receipt of home-based palliative care.
Objectives: This study aims to determine the congruence between preferred and actual place of death among cancer patients in home-based palliative care programs.
Design: A longitudinal prospective cohort study was conducted. Congruence between preferred and actual place of death was measured. Both univariate and multivariate analyses were used to assess the determinants of achieving a preferred place of death. From July 2010 to August 2012, a total of 290 caregivers were interviewed biweekly over the course of their palliative care trajectory from entry to the program and death.
Results: The overall congruence between preferred and actual place of death was 71.72%. Home was the most preferred place of death. The intensity of home-based nursing visits and hours of care from personal support workers (PSWs) increased the likelihood of achieving death in a preferred setting.
Conclusions: The provision of care by home-based nurse visits and PSWs contributed to achieving a greater congruence between preferred and actual place of death. This finding highlights the importance of formal care providers in signaling and executing the preferences of clients in receipt of home-based palliative care.
Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.
Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.
Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013).
Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.
Survival estimates are very important to patients with terminal cancer. The C-reactive protein (CRP)/albumin ratio is associated with cancer outcomes. However, few studies have investigated the dose-response association in terminal cancer patients. Therefore, we aimed to evaluate the association between the CRP/albumin ratio and mortality in terminal cancer patients using a longitudinal analysis. We retrospectively investigated the electronic medical records of 435 inpatients with terminal cancer admitted to the palliative care unit of Yeouido St. Mary's Hospital between October 8, 2015, and January 17, 2018. In total, 382 patients with terminal cancer were enrolled in the study. The serum CRP/albumin ratio measured at admission had a linear dose-response relationship with the risk of death among the terminal cancer patients (P for linearity = .011). The multivariate analyses showed that the CRP/albumin ratio was an independent prognostic factor (Model 1, CRP/albumin ratio >48.53 × 10-4: HR = 2.68, 95% CI = 1.82–3.93; Model 2, tertile 2: HR = 1.91, 95% CI = 1.31–2.82 and tertile 3: HR = 3.66, 95% CI = 2.24–5.97). The relationship between a high CRP/albumin ratio and poor survival was a flat L-shape for survival time with an inflection point at approximately 15 days, while the relationship was not significant in terminal cancer patients who survived beyond 30 days. This study demonstrated that high CRP/albumin ratios are significantly and independently associated with the short-term survival prognosis of terminal cancer patients within 30 days.
The aim of the study is to evaluate the intensity of symptoms, and any treatment and therapeutic procedures received by advanced chronic patients in nursing homes. A multi-centre prospective study was conducted in six nursing homes for five months. A nurse trainer selected palliative care patients from whom the sample was randomly selected for inclusion. The Edmonton Symptoms Assessment Scale, therapeutic procedures, and treatment were evaluated. Parametric and non-parametric tests were used to evaluate month-to-month differences and differences between those who died and those who did not. A total of 107 residents were evaluated. At the end of the follow-up, 39 had (34.6%) died. All symptoms (p < 0.050) increased in intensity in the last week of life. Symptoms were more intense in those who had died at follow-up (p < 0.05). The use of aerosol sprays (p = 0.008), oxygen therapy (p < 0.001), opioids (p < 0.001), antibiotics (p = 0.004), and bronchodilators (p = 0.003) increased in the last week of life. Peripheral venous catheters (p = 0.022), corticoids (p = 0.007), antiemetics (p < 0.001), and antidepressants (p < 0.05) were used more in the patients who died. In conclusion, the use of therapeutic procedures (such as urinary catheters, peripheral venous catheter placement, and enteral feeding) and drugs (such as antibiotics, anxiolytics, and new antidepressant prescriptions) should be carefully considered in this clinical setting.
BACKGROUND: End-of-life experience is a subject of significant policy interest. National longitudinal studies offer valuable opportunities to examine individual-level experiences. Ireland is an international leader in palliative and end-of-life care rankings. We aimed to describe the prevalence of modifiable problems (pain, falls, depression) in Ireland, and to evaluate associations with place of death, healthcare utilisation, and formal and informal costs in the last year of life.
METHODS: The Irish Longitudinal Study on Ageing (TILDA) is a nationally representative sample of over-50-year-olds, recruited in Wave 1 (2009-2010) and participating in biannual assessment. In the event of a participant's death, TILDA approaches a close relative or friend to complete a voluntary interview on end-of-life experience. We evaluated associations using multinomial logistic regression for place of death, ordinary least squares for utilisation, and generalised linear models for costs. We identified 14 independent variables for regressions from a rich set of potential predictors. Of 516 confirmed deaths between Waves 1 and 3, the analytic sample contained 375 (73%) decedents for whom proxies completed an interview.
RESULTS: There was high prevalence of modifiable problems pain (50%), depression (45%) and falls (41%). Those with a cancer diagnosis were more likely to die at home (relative risk ratio: 2.5; 95% CI: 1.3-4.8) or in an inpatient hospice (10.2; 2.7-39.2) than those without. Place of death and patterns of health care use were determined not only by clinical need, but other factors including age and household structure. Unpaid care accounted for 37% of all care received but access to this care, as well as place of death, may be adversely affected by living alone or in a rural area. Deficits in unpaid care are not balanced by higher formal care use.
CONCLUSIONS: Despite Ireland's well-established palliative care services, clinical need is not the sole determinant of end-of-life experience. Cancer diagnosis and access to family supports were additional key determinants. Future policy reforms should revisit persistent inequities by diagnosis, which may be mitigated through comprehensive geriatric assessment in hospitals. Further consideration of policies to support unpaid carers is also warranted.
Several longitudinal studies show that over time the American public has become more approving of euthanasia and suicide for terminally ill persons. Yet, these previous findings are limited because they derive from biased estimates of disaggregated hierarchical data. Using insights from life course sociological theory and cross-classified logistic regression models, I better account for this liberalization process by disentangling the age, period, and cohort effects that contribute to longitudinal changes in these attitudes. The results of the analysis point toward a continued liberalization of both attitudes over time, although the magnitude of change was greater for suicide compared with euthanasia. More fluctuation in the probability of supporting both measures was exhibited for the age and period effects over the cohort effects. In addition, age-based differences in supporting both measures were found between men and women and various religious affiliations.
Objectives: To gain preliminary data regarding the prevalence of proximal deep vein thrombosis (DVT) in those with non-malignant conditions admitted to specialist palliative care units (SPCUs).
Methods: Data were collected as part of a prospective longitudinal observational study in five SPCUs in England, Wales and Northern Ireland (Registration: ISRCTN97567719) to estimate the prevalence of proximal femoral vein DVT in people admitted to SPCUs. The primary outcome for this exploratory substudy was the prevalence of DVT in patients with non-malignant palliative conditions. Consecutive consenting adults underwent bilateral femoral vein ultrasonography within 48 hours of admission. Data were collected on symptoms associated with venous thromboembolism. Patients were ineligible if the estimated prognosis was <5 days. Cross-sectional descriptive analysis was conducted on baseline data and prevalence estimates presented with 95% CIs.
Results: 1390 patients were screened, 28 patients had non-malignant disease and all were recruited. The mean age 68·8 (SD 12·0), range 43–86 years; men 61%; survival mean 86 (SD 108.5) range 1–345 days. No patient had a history of venous thromboembolism. Four (14%) were receiving thromboprophylaxis. Of 22 evaluable scans, 8 (36%, 95% CI: 17% to 59%) showed femoral vein DVT. The level of reported relevant symptoms (leg oedema, leg pain, chest pain and breathlessness) was high irrespective of the presence of DVT.
Conclusions: Our exploratory data indicate one in three people admitted to an SPCU with non-malignant disease had a femoral vein DVT. Although definitive conclusions cannot be drawn, these data justify a larger prospective survey.
BACKGROUND: Palliative care has been developed in recent years in many sub-Saharan countries in Africa due to activities of African Association for Palliative Care. Palliative care units have been established also in most hospitals in Tanzania. Yet very little is known about their functions. Long-term studies about the sustainability of palliative care have not been carried out.
METHODS: The attitudes of 101 members of hospital staff and persons in charge of palliative care services of Ilembula District Designated Hospital (IDDH), Tanzania, were assessed using a modified and prevalidated questionnaire annually in 2014 to 2017. The inquiries were executed on randomly allocated days. Also, the patient and economy registries were analyzed. Additional qualitative data were obtained in personal interviews and during observational visits twice a year at the IDDH.
RESULTS: Ilembula District Designated Hospital has a true multiprofessional palliative care team, which provides services in the hospital, in the villages, and at homes. The activities are based on careful 5-year planning and budgeting. Up to 17 villages have been included in the services. Ninety-five percent of the patients were HIV infected. Short-acting morphine oral solution was the only available strong opioid. The hospital staff evaluated palliative care as good or excellent; 50% of the staff would need more support in the end-of-life care.
CONCLUSIONS: A sustainable palliative care service can be built in a Tanzanian rural hospital if an advanced planning and budgeting are made. In Tanzania, the biggest group of palliative care patients are still HIV-infected individuals. There is a lack of opioids in the country.
CONTEXT: Patients with advanced breast cancer have low rates of survival that can be associated with symptom burden.
OBJECTIVES: This study seeks to characterize the effect of longitudinally-collected symptom scores on predicting time to death for advanced breast cancer patients.
METHODS: A cohort of 993 Stage IV breast cancer patients was constructed using linked population-level health administrative databases that captured longitudinally-collected symptom data using the Edmonton Symptom Assessment System. Data was captured on individual symptom scores (20,371 assessments) for pain, tiredness, drowsiness, nausea, appetite, dyspnea, depression, anxiety and wellbeing, as well as three summative scores of total symptom distress score (TSDS), physical symptom score, and psychological symptom score. A joint modelling approach was undertaken to simultaneously model repeated measures longitudinal data and time-to-event data.
RESULTS: Of patients who died in the study, 56.11% survived for a mean time of less than three years and had lower mean symptom scores for all symptoms except shortness of breath, in comparison to patients who lived for greater than three years. Symptom burden was predictive of patient time to death for all symptoms, with risk of death increasing with worsening symptom scores. For TSDS, age at diagnosis (0.009, p<0.05), chemotherapy (-0.63, p<0.001) and palliative care (3.15, p<0.001) were significant predictors of patient time to death.
CONCLUSIONS: Patients with advanced breast cancer experience chronic, ongoing low symptom burden which predicts patient time to death. Future research should examine the mechanisms by which patient characteristics, treatment, supportive and palliative care can have an impact on patient survival.
Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty.
Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty.
Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care.
Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.
Terminally ill cancer patients with limited life expectancies (LLEs) are often prescribed multiple medications to control acute symptoms associated with cancer such as dyspnoea, pain, nausea and vomiting, and anxiety. Medications are also commonly prescribed to prevent or treat other common, long-term comorbid conditions such as hypertension, diabetes mellitus and hyperlipidaemia. Early identification of unnecessary preventive medications at the end of life can improve quality of life. Limited research has investigated whether preventive medications are withdrawn in patients with terminal cancer. The aim of this project was to evaluate the prevalence of preventive medication use in terminally ill cancer patients with LLE of 6 months or less.
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