The first decade of the Danish Palliative Care Database: improvements and ongoing challenges in the quality and use of specialised palliative care.

BACKGROUND: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference. PURPOSE: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients. Patients/material: Patients aged 18+ years who died from 2010 until 2020. METHOD: Register-based study with the Danish Palliative Care Database as the main data source. Indicator changes were reported as percentage fulfilment. RESULTS: From 2010 until 2020, the proportion of patients with non-cancer diseases in SPC increased slightly (2.5-7.2%). In 2019, fulfilment of the five indicators for cancer and non-cancer were: (1) 81% vs. 73%; (2) 73% vs. 68%; (3A) 50%; (3B) 2%; (4) 73% vs. 66%; (5) 73% vs. 65%. Whereas all other indicators improved, the proportion of patients waiting less than 10 days from referral to contact decreased. Differences between type of unit were found, mainly lower for hospice. INTERPRETATION: Most patients in SPC had cancer. All indicators except waiting time improved during the 10-year period. The establishment of the Danish Palliative Care Database may have contributed to the positive development; however, SPC in Denmark needs to be improved, especially regarding a reduction in waiting time and enhanced contact for non-cancer patients.

Effects of home-based specialized palliative care and dyadic psychological intervention on caregiver burden: results from a randomized controlled trial.

Background The Domus study, a randomized controlled trial (RCT), evaluated the effect of home-based specialized palliative care (SPC) reinforced with a psychological intervention for the patient-caregiver dyad on increasing advanced cancer patients' time spent at home, as opposed to hospitalized, and the number of home deaths. As palliative care extends to include support for patients' families and may thus assist caregivers and decrease demands on them, in this study we evaluated a secondary outcome, caregiver burden.Material and Methods Patients with incurable cancer and their caregivers were randomized (1:1) to care as usual or home-based SPC. Caregiver burden was assessed using the Zarit Burden Interview (ZBI) at baseline and 2, 4, 8 weeks and 6 months after randomization. Intervention effects were assessed in mixed effects models.Results A total of 258 caregivers were enrolled. Eleven per cent of informal caregivers experienced severe caregiver burden at baseline. Caregiver burden increased significantly over time in both groups (p = 0.0003), but no significant effect of the intervention was seen on overall caregiver burden (p = 0.5046) or burden subscales measuring role and personal strain.Conclusion In line with the majority of previous RCTs, the Domus intervention was not able to significantly reduce caregiver burden. Future interventions should consider targeting only caregivers reporting the greatest caregiver burden.

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences.

BACKGROUND: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. AIM: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. DESIGN: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. SETTING/PARTICIPANTS: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. RESULTS: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." CONCLUSIONS: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.

The impact of caring on caregivers of patients with life-threatening organ failure.

OBJECTIVES: This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping. METHODS: Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019-2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping. RESULTS: The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001). SIGNIFICANCE OF RESULTS: Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver's health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.

Co-Occurrence of Prevalent Symptoms in Patients Receiving Hemodialysis - A Cross-Sectional Survey.

Patients with chronic kidney disease undergoing hemodialysis generally have a significant symptom burden, which may interfere with their quality of life. The aim of this study was to identify the prevalence of fatigue, pain, anxiety, and depression in patients on hemodialysis and analyze their co-occurrence. A cross-sectional study used self-reported measures. A total of 242 patients aged 18 years or older were initially screened; 141 were included in the study; 129 answered the questionnaires (response rate 91%). Preva lences were 24.8% had moderate to severe fatigue, 38.0% had pain, 32.6% had anxiety, and 29.5% had depression. The prevalence of coexistent moderate to severe symptoms ranged from 15.5% to 25.6%. Further research is needed to better understand the symptom burden and their co-occurrence in patients receiving hemodialysis.

Combining subjective and objective appraisals of cognitive dysfunction in patients with cancer: a deeper understanding of meaning and impact on suffering?

PURPOSE: Patients with advanced cancer often experience cognitive dysfunction, which may influence decision making, self-perception, and existential well-being. However, there is little evidence regarding this issue. This study analysed associations between objective neuropsychological measures and patients' self-report of cognitive dysfunction interfering with everyday life, general well-being, and sense of existential value. METHODS: A mixed method study assessed 13 adult patients with advanced cancer with validated neuropsychological tests, which assessed sustained attention, psychomotor speed, memory/attention, mental flexibility, and a measure of global cognitive function. These were followed by semi-structured interviews focusing on subjective experiences of cognitive dysfunction. Agreement between subjective and objective measures were analysed by Cohen's Kappa (k). Thematic analysis explored associations with cognitive deficits. RESULTS: Poor cognitive performance on the neuropsychological tests was observed regarding sustained attention (n = 8), psychomotor speed (n = 1), memory/attention (n = 2), mental flexibility (n = 9), and global cognitive function (n = 3). Almost all patients (n = 12) had complaints of cognitive dysfunction. However, the agreement between the two assessments was weak (k ≤ 0.264). Cognitive dysfunction challenged the patients with regard to practice everyday life including their existential values related to meaning of life and well-being. Adjustment of the sense of living according to one's existential values and changes of self-perception were also related positively and negatively to existential well-being. CONCLUSION: Despite the weak agreement between objective and subjective measures of cognitive function, many of the patients reported experiences of cognitive dysfunction that had an impact on their daily life and existential well-being, adding to the suffering experienced.

Improvement of pain management in a comprehensive cancer center: a comparison of two cross-sectional studies 8 years apart.

CONTEXT: In 2011, a multidisciplinary palliative team (MPT) was established at Rigshospitalet (DK) and a cross-sectional study in inpatients was carried out at the Departments of Oncology and Hematology. High symptom burden, high prevalence of pain (64%), and insufficient analgesic treatment were demonstrated. In 2019, a similar study was carried out. OBJECTIVES: This study compares prevalence of symptoms including pain and analyzes analgesic treatment of adult in-patients in a comprehensive cancer center. METHODS: Two cross-sectional studies (May-Jun 2011; Feb-Sep 2019). INCLUSION CRITERIA: malignant diseases, age ≥ 18 y, able to understand Danish. EORTC QLQ-C30 and Brief Pain Inventory (BPI) were applied. RESULTS: A total of 134 and 183 inpatients were included in 2011 and 2019, respectively. Differences in the two populations were seen; in 2019 more patients had advanced disease (P = 0.0096), lower performance status (P = 0.0028), and a palliative treatment plan (P = 0.0034). The prevalence of impairments and symptoms was high and similar in the 2 years with exception of severe pain (P = 0.0143) and neuropathic pain (P < 0.0001) which increased in 2019. Moreover, pain relief significantly improved, and significantly fewer patients with pain were left untreated. Significant increase in opioid and adjuvant analgesic prescription in 2019. CONCLUSION: An overall unchanged high symptom burden was observed. However, improvement of pain management was observed in 2019. The establishment of a MPT may possibly have contributed to improved pain management.

Identification of palliative care needs in hemodialysis patients: An update.

OBJECTIVE: End-stage kidney disease and hemodialysis (HD) treatment are associated with a high symptom burden in many patients. This study aimed at updating patient-reported outcomes concerning quality of life, fatigue, anxiety, and depression in HD patients treated in a single center in order to assess the need for palliative care provision. METHOD: A cross-sectional design, in which a sample of patients treated at a single HD department (Rigshospitalet, Denmark) between January and June 2019, was analyzed using the Kidney Disease Quality of Life Short Form, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. In addition, we compared the results with previously published data from the same department (2000) and with an age- and sex-matched sample from the Danish general population (1997/2014). Chi-square and t-tests were used for comparisons. RESULTS: Screened patients = 242, included = 141, analyzed = 131 (70.2% male, mean age = 61.3 years). HD patients reported low scores for quality of life, high scores for fatigue, and approximately 30% had anxiety/depression. Regarding quality of life, they had significantly lower scores on general health (P ≤ 0.000), vitality (P = 0.009), social functioning (P = 0.001), mental health (P = 0.007), and mental component (P = 0.005) compared with former data of HD patients. Moreover, they reported significantly poorer quality of life and worse fatigue compared with the general Danish population. SIGNIFICANCE OF RESULTS: In the patients undergoing HD, quality of life was poor and worsened when compared with former HD patients' data. Additionally, fatigue, depression, and anxiety in HD patients were prevalent. A clear need for palliative care provision was observed.

Prescriptions of analgesics during chronic cancer disease trajectories: A complete national cohort study.

PURPOSE: Pain management principles vary considerably between chronic noncancer, acute and cancer pain. Cancer patients responding to oncological treatment may live with low tumor burden for years. Opioid treatment should reflect that the ratio between benefits and risks in these patients is different from patients with a rapidly progressive disease. Our study investigated the prescription patterns of analgesics in patients who died 6 to 9 years after cancer diagnosis. PATIENTS AND METHODS: A pharmaco-epidemiological study based on the Norwegian Prescription Database and Cancer Registry of Norway. The 1-year periodic prevalence of receiving different analgesics and of persistent opioid use were analyzed. Persistent opioid use was defined as >365 Defined Daily Doses or >9000 mg Oral Morphine Equivalents during 365 days with prescriptions in all quarters of the 365 days period. Data were reported for the first 7 years for patients who lived 8-9 years after cancer diagnosis (N = 1502), while for patients who lived 6-7 years (N = 3817) data was reported for the first 5 years after diagnosis. RESULTS: Compared to age- and gender adjusted general population, the 1-year periodic prevalence of opioid prescription was doubled the first year after diagnosis and remained raised with approximately 50%. The prevalence of persistent opioid use was threefold of the general population. Approximately 55% of patients with persistent opioid use 4 years after a cancer diagnosis were co-medicated with high doses of benzodiazepines and/or benzodiazepine-related hypnotics. CONCLUSION: The findings of increased opioid use raise concerns regarding whether the benefits outweigh risks and side effects in this population.

Association between carbohydrate intake and fatty acids in the de novo lipogenic pathway in serum phospholipids and adipose tissue in a population of Swedish men.

PURPOSE: Fatty acid composition in blood and adipose tissue (AT) is a useful biomarker of dietary fat quality. However, circulating saturated fatty acids (SFA) and monounsaturated fatty acids (MUFA) have been proposed to also reflect carbohydrate-induced de novo lipogenesis (DNL) and stearoyl-CoA desaturase (SCD) activity. We aimed to test the hypothesis that high carbohydrate intake is related to SFA and MUFA in serum or AT in a Swedish population. METHODS: Fatty acid composition was measured in serum phospholipids (PL) and AT by gas chromatography in 63-year-old men (n = 299). Carbohydrate and alcohol intake was assessed (validated 7-day food records) in relation to total SFA, 16:0 (palmitate), 16:1 (palmitoleate), and estimated SCD activity (16:1n-7/16:0-ratio) in serum PL and in AT, respectively. RESULTS: Total carbohydrate intake was inversely associated with 16:0 in PL (P = 0.005), independently of BMI. Disaccharides were non-linearly (restricted cubic splines) and weakly associated with 16:1 and SCD activity in PL (nonlinear trend, P ≤ 0.02) but not AT. Carbohydrate intake and SCD expression were not associated (P ≥ 0.08, n = 81). Alcohol intake was, however, linearly associated with 16:0 in PL (P < 0.001), and with 16:1 (P < 0.001) and SCD activity (P ≤ 0.005) in both PL and AT. CONCLUSIONS: Higher carbohydrate intake from sugar-rich foods or beverages was not clearly reflected by higher SFA or SCD activity in serum PL or AT. Alcohol was, however, associated with higher SFA and MUFA.

Exploratory analyses of the Danish Palliative Care Trial (DanPaCT): a randomized trial of early specialized palliative care plus standard care versus standard care in advanced cancer patients.

BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials. OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT). METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve. RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item 'overall satisfaction with the help received from the health care system' with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05). CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group. TRIAL REGISTRATION: NCT01348048.

Cost-effectiveness analysis of systematic fast-track transition from oncological treatment to specialised palliative care at home for patients and their caregivers: the DOMUS trial.

BACKGROUND: While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. METHODS: A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial ( Clinicaltrials.gov : NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. RESULTS: In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value < 0.000). The mean incremental gain was 0.01678 QALY (p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. CONCLUSION: This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. TRIAL REGISTRATION: The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637 .

Dyadic coping in specialized palliative care intervention for patients with advanced cancer and their caregivers: Effects and mediation in a randomized controlled trial.

OBJECTIVE: Specialized palliative care (SPC) interventions increasingly include patient-caregiver dyads, but their effects on dyadic coping are unknown. We investigated whether an SPC and dyadic psychological intervention increased aspects of dyadic coping in patients with advanced cancer and their caregivers, whether dyad characteristics moderated effects and whether aspects of dyadic coping mediated significant intervention effects on caregivers' anxiety and depression. METHODS: We randomized 258 patients with incurable cancer and their caregivers to care as usual or accelerated transition from oncological treatment to home-based SPC and dyadic psychological support. In secondary outcome analyses, using mixed-effects models, we estimated intervention effects and 95% confidence intervals (CIs) for communication of stress and common coping, and moderation by dyad type and demographics. In path analyses, we investigated whether stress communication and common coping mediated intervention effects on caregivers' symptoms of anxiety and depression. (Clinicaltrials.gov NCT01885637). RESULTS: The intervention significantly increased common coping in patients and caregivers in couples (estimated difference, 0.68; 95% CI, 0.11 to 1.24) and stress communication by partner caregivers (0.97; 0.24 to 1.24). We found some support for different intervention effects for spouses and other dyads, but no evidence of mediation. CONCLUSIONS: Specialized palliative care and dyadic psychological intervention may affect aspects of dyadic coping. Common coping and stress communication did not mediate the previously found significant intervention effects on caregiver anxiety and depression, indicating that other mechanisms may have been central in the intervention.

Tramadol use in Norway: A register-based population study.

PURPOSE: Increasing use of tramadol for chronic non-cancer pain is concerning since tramadol users may be at risk of developing recurrent opioid use with increasing opioid consumption and co-medication. Therefore, we investigated a complete national cohort of tramadol users. METHODS: The study population (154 042 adult individuals in Norway, who redeemed ≥ one tramadol prescription in 2012) was stratified into four groups according to their opioid use 2 years before their first tramadol prescription in 2012 and followed until 2016. Information on all dispensed opioid analgesics, benzodiazepines (BZDs), and BZD-related Z-hypnotics were retrieved from the Norwegian Prescription Database. RESULTS: Six percent of opioid naïve tramadol users (no opioid use 2 years before tramadol use in 2012) became recurrent users (received opioids annually during 4-year follow-up), almost doubled their mean opioid consumption (66 to 108 defined daily doses [DDD]). One-quarter proceeded to strong opioids or was co-medicated with BZDs, one-third with Z-hypnotics. Among former weak opioid users, 39.8% became recurrent users, 18.7% proceeded to strong opioids, mean opioid consumption increased slightly, one-third used BZDs, or Z-hypnotics concurrently. Among former strong opioid and users in palliative care; 61%, 70% became recurrent users and developed a similar prescription pattern (high and increasing mean opioid consumption, 301 to 318, 413 to 430 DDD); half of them proceeded to strong opioids and/or used BZDs or Z-hypnotics concurrently. CONCLUSIONS: Many patients who developed recurrent opioid use received prescriptions which substantially conflicted with existing guidelines and might lead to problematic opioid use.

Chronic Pain, Opioid Therapy, Sexual Desire, and Satisfaction in Sexual Life: A Population-Based Survey.

OBJECTIVES: Associations between chronic pain, opioid use, and sexual problems are acknowledged, but population-based investigations are sparse. Our study aimed at investigating the associations between chronic noncancer pain (CNCP), opioid use, lack of/low sexual desire, and dissatisfaction with sexual life. SUBJECTS: In 2013, 11,517 randomly selected individuals of the Danish population (18-74 years old without cancer) completed a self-administered questionnaire. METHODS: We classified CNCP: pain lasting six months or longer, short-term opioid use: one or more prescriptions the previous year, long-term opioid use: one or more prescriptions per month for six months the previous year. Sexual problems were assessed by four closed-ended questions. Data on dispensed opioids were retrieved from the Danish National Prescription Registry. Multiple logistic regression analysis was used to examine associations between CNCP, opioid use, and lack of/low sexual desire, and dissatisfaction in sexual life, presented as odds ratios (95% confidence intervals [CIs]). RESULTS: Compared with individuals without CNCP, individuals with CNCP in the long-term and short-term opioid use group and in the nonopioid use group were more likely to report a lack of/low sexual desire (OR = 2.64, 95% CI = 1.80-3.88; OR = 1.82, 95% CI = 1.39-2.38; OR = 1.46, 95% CI = 1.28-1.67, respectively) and dissatisfaction with sex life (OR = 1.69, 95% CI = 1.07-2.67; OR = 1.35, 95% CI = 1.00-1.82; OR = 1.38, 95% CI = 1.22-1.58, respectively). Compared with CNCP patients not using opioids, long-term opioid users with CNCP had statistically significant higher odds of reporting a lack of/low sexual desire (OR = 1.81, 95% CI = 1.23-2.68). CONCLUSIONS: Long-term opioid therapy for CNCP requires special attention due to its potential in suppressing sexual desire.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Effect of home-based specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression: a randomised controlled trial.

BACKGROUND: Specialised palliative care trials often fail to address intervention effects on caregiver anxiety and depression, particularly in bereavement. We evaluate effects of specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression in a randomised controlled trial (RCT). METHODS: Patients with incurable cancer and limited antineoplastic treatment options and their caregivers, recruited from a university hospital oncology department, were randomised (1:1) to care as usual or accelerated transition from oncological treatment to home-based specialised palliative care. We assessed caregivers' symptoms of anxiety and depression with the Symptom Checklist-92 up to six months after randomisation and 19 months into bereavement, and estimated intervention effects in mixed effects models. RESULTS: The 'Domus' trial enrolled 258 caregivers. The intervention significantly attenuated increases in caregivers' symptoms of anxiety overall (estimated difference, -0.12; 95% confidence interval, -0.22 to -0.01, p = 0.0266), and symptoms of depression at eight weeks (-0.17; -0.33 to -0.02; p = 0.0314), six months (-0.27; -0.49 to -0.05; p = 0.0165), and in bereavement at two weeks (-0.28; -0.52 to -0.03; p = 0.0295) and two months (-0.24; -0.48 to -0.01; p = 0.0448). CONCLUSIONS: This first RCT evaluating specialised palliative care with dyadic psychological support significantly attenuated caregiver anxiety and depression before and during bereavement. (Clinicaltrials.gov: NCT01885637).

Pain in pancreatic ductal adenocarcinoma: A multidisciplinary, International guideline for optimized management.

Abdominal pain is an important symptom in most patients with pancreatic ductal adenocarcinoma (PDAC). Adequate control of pain is often unsatisfactory due to limited treatment options and significant variation in local practice, emphasizing the need for a multidisciplinary approach. This review contends that improvement in the management of PDAC pain will result from a synthesis of best practice and evidence around the world in a multidisciplinary way. To improve clinical utility and evaluation, the evidence was rated according to the GRADE guidelines by a group of international experts. An algorithm is presented, which brings together all currently available treatment options. Pain is best treated early on with analgesics with most patients requiring opioids, but neurolytic procedures are often required later in the disease course. Celiac plexus neurolysis offers medium term relief in a substantial number of patients, but other procedures such as splanchnicectomy are also available. Palliative chemotherapy also provides pain relief as a collateral benefit. It is stressed that the assessment of pain must take into account the broader context of other physical and psychological symptoms. Adjunctive treatments for pain, depression and anxiety as well as radiotherapy, endoscopic therapy and neuromodulation may be required in selected patients. There are few comparative studies to help define which combination and order of these treatment options should be applied. New pain therapies are emerging and could for example target neural transmitters. However, until better methods are available, management of pain should be individualized in a multidisciplinary setting to ensure optimal care.

Is specialized palliative cancer care associated with use of antineoplastic treatment at the end of life? A population-based cohort study.

BACKGROUND: The use of chemotherapy in the last 14 days of life should be as low as possible. AIM: To study the factors related to the use of chemotherapy in the last 14 days of life and the factors related to concurrent antineoplastic treatment and specialized palliative care. DESIGN: This was a population-based cohort study. The data were collected from the Danish Register of Causes of Death, the Danish National Patient Register, and the Danish Palliative Care Database. Analyses were descriptive and multivariate logistic regression. SETTING/PARTICIPANTS: Cancer decedents between 2010 and 2013 in the Capital Region of Denmark. RESULTS: During the study period, 17,246 individuals died of cancer and 33% received specialized palliative care. In the last 14 days of life, 4.2% received chemotherapy. Younger patients and patients with hematological cancers were more likely to receive chemotherapy in the last 14 days of life. Receiving specialized palliative care was associated with a lower risk of receiving chemotherapy in the last 14 days of life-odds ratio 0.15 for hospices and 0.53 for palliative hospital units. A total of 8% of the population received concurrent antineoplastic treatment and specialized palliative care. Female gender, younger age, and breast and prostate cancer were significantly associated with this concurrent model. CONCLUSION: Overall, the incidence of antineoplastic treatment in the last 14 days of life was low compared to other studies. Patients in specialized palliative care had a reduced risk of receiving chemotherapy at the end of life.

All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014.

AIM: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. METHODS: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. RESULTS: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. CONCLUSION: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.