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.

Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Utilisation of hospital-based specialist palliative care in patients with gynaecological cancer: Temporal trends, predictors and association with high-intensity end-of-life care.

OBJECTIVE: To examine hospital-based specialist palliative care (SPC) utilisation among patients with gynaecological cancer, including temporal trends, predictors and associations with high-intensity end-of-life care. METHODS: We conducted a nationwide registry-based study for all patients dying from gynaecological cancer in Denmark during 2010-2016. We estimated the proportions of patients receiving SPC by year of death and used regression analyses to examine predictors of SPC utilisation. Use of high-intensity end-of-life care according to SPC utilisation was compared by regression analyses adjusting for type of gynaecological cancer, year of death, age, comorbidities, residential region, marital/cohabitation status, income level and migrant status. RESULTS: Among 4502 patients dying from gynaecological cancer, the proportion of patients receiving SPC increased from 24.2% in 2010 to 50.7% in 2016. Young age, three or more comorbidities, residence outside the Capital Region and being immigrant/descendant were associated with increased SPC utilisation, whereas income, cancer type and stage were not. SPC was associated with lower high-intensity end-of-life care utilisation. Particularly, when compared with patients not receiving SPC, patients who accessed SPC >30 days before death had 88% lower risk of intensive care unit admissions within 30 days before death (adjusted relative risk: 0.12 (95% CI: 0.06; 0.24)) and 96% lower risk of surgery within 14 days before death (adjusted relative risk: 0.04 (95% CI: 0.01; 0.31)). CONCLUSIONS: Among patients dying from gynaecological cancer, SPC utilisation increased over time and age, comorbidities, residential region and migrant status were associated with access to SPC. Furthermore, SPC was associated with lower use of high-intensity end-of-life care.

Barriers in cancer trajectories of patients with pre-existing severe mental disorders-A systematic review.

BACKGROUND: Patients with pre-existing severe mental disorders are significantly less likely to receive guideline-recommended cancer treatment and seems to have a significantly lower rate of cancer survival compared to patients with cancer without mental disorders. AIM: To perform a systematic review on barriers at patient-, provider- and system-levels in cancer trajectories of patients with pre-existing severe mental disorders. METHOD: A systematic review was performed following the PRISMA guidelines (PROSPERO ID: CRD42022316020). RESULTS: Nine eligible studies were identified. Barriers at patient-level included lack of self-care and ability to recognize physical symptoms and signs. Provider-level barriers included stigma from health care professionals on mental disorders, whereas system-level barriers included fragmented health care and consequences of this. CONCLUSION: This systematic review found that barriers at patient-, provider- and system-levels exist in cancer trajectories for patients with severe mental disorders, causing disparities in cancer care. Further research is needed to improve cancer trajectories for patients with severe mental disorder.

Higher overall admittance of immigrants to specialised palliative care in Denmark: a nationwide register-based study of 99,624 patients with cancer.

BACKGROUND: The population of immigrants in Europe is ageing. Accordingly, the number of immigrants with life-threatening diseases and need for specialised palliative care will increase. In Europe, immigrants' admittance to specialised palliative care is not well explored. AIM: To investigate whether country of origin was associated with admittance to (I) palliative care team/unit, (II) hospice, and/or (III) specialised palliative care, overall (i.e. palliative care team/unit and/or hospice). DESIGN: Data sources for the population cohort study were the Danish Palliative Care Database and several nationwide registers. We investigated the associations between country of origin and admittance to specialised palliative care, overall, and to type of palliative care using logistic regression analyses. SETTING/PARTICIPANTS: In 2010-2016, 104,775 cancer patients died in Denmark: 96% were born in Denmark, 2% in other Western countries, and 2% in non-Western countries. RESULTS: Overall admittance to specialised palliative care was higher for immigrants from other Western (OR = 1.13; 95%CI: 1.03-1.24) and non-Western countries (OR = 1.22; 95%CI: 1.08-1.37) than for the majority population. Similar results were found for admittance to palliative care teams. No difference in admittance to hospice was found for immigrants from other Western countries (OR = 1.04; 95%CI: 0.93-1.16) compared to the majority population, while lower admittance was found for non-Western immigrants (OR = 0.70; 95%CI: 0.60-0.81). CONCLUSION: Admittance to specialised palliative care was higher for immigrants than for the majority population as higher admittance to palliative care teams for non-Western immigrants more than compensated for the lower hospice admittance. This may reflect a combination of larger needs and that hospital-based and home-based services are perceived as preferable by immigrants.

The quality of end of life care for Danish cancer patients who have received specialized palliative: a national survey using the Danish version of VOICES-SF.

BACKGROUND: National recommendations state that Danish patients with complex palliative needs should have access to specialized palliative care but little is known about the perceived quality of this care or end of life care in general. AIM: To assess how end of life care was evaluated by the bereaved spouses and to investigate whether the perceived quality was associated with (1) quantity of specialized palliative care provided, (2) place of death, and (3) emotional state when completing the questionnaire. DESIGN: The bereaved spouses of 1584 cancer patients who had received specialized palliative care were invited to answer the Views Of Informal Carers - Evaluation of Services - Short Form (VOICES-SF) and the Hospital Anxiety and Depression Scale (HADS) approximately 3-9 months after the patient's death. RESULTS: A total of 787 (50%) of the invited spouses participated. In the last 3 months of the patient's life, the quality of all services taken together was rated as good, excellent, or outstanding in 83% of the cases and it was significantly associated with place of death (p = 0.0051, fewest considered it "fair" or "poor" if the patient died at home). In total, 93% reported that the patient died at the right place although only 74% died at the patient's preferred place. Higher levels of anxiety (p = 0.01) but not depression at the time of questionnaire completion was associated with lower satisfaction with the overall quality of care. CONCLUSION: The quality of care was rated very highly by bereaved spouses of patients receiving specialized palliative care.

The quality of end-of-life care for Danish cancer patients who have received non-specialized palliative care: a national survey using the Danish version of VOICES-SF.

PURPOSE: About half of Danish patients dying from cancer have never been in contact with specialized palliative care. Non-specialized palliative care in Denmark, i.e., somatic hospital departments, community nurses, and general practitioners, has rarely been described or evaluated. We aim to assess how non-specialized palliative care was evaluated by bereaved spouses, and to test whether distress when completing the questionnaire and ratings of aspects of end-of-life care was associated with satisfaction with place of death and overall quality of end-of-life care. METHODS: Bereaved spouses of 792 cancer patients who had received non-specialized palliative care were invited to answer the Views of Informal Carers-Evaluation of Services-Short Form (VOICES-SF) and the Hospital Anxiety and Depression Scale (HADS) 3-9 months after the patient's death. RESULTS: A total of 280 (36%) of invited spouses participated. In the last 3 months of the patient's life, the quality of all services taken together was rated as good, excellent, or outstanding in 70% of the cases. Satisfaction was associated with respondent's current distress (p = 0.0004). Eighty percent of bereaved spouses believed that the patient had died in the right place. Satisfaction with place of death was associated with place of death (p = 0.012) and the respondent's current distress (p = 0.0016). CONCLUSION: Satisfaction with place of death and overall quality of services was generally high but was rated lower by spouses reporting higher levels of distress when completing the questionnaire. Distress should be taken into account whenever services are evaluated by bereaved relatives.

Inequality in place-of-death among children: a Danish nationwide study.

To identify predictors for home death among children using socio-demographic factors and cause of death. It is a nationwide registry study. A cohort of children (1-17 years) who died between 1 January 2006 and 31 December 2016. It was set in Denmark, Europe. Predictors for home death were assessed: age, gender, diagnosis, region of residence, urbanicity, household income and immigrant status. Of 938 deceased children included, causes of death were solid tumours (17.3%), haematological cancers (8.5%) and non-cancerous conditions (74.2%). A total of 25% died at home. Compared to the lowest quartile, the groups with higher household income did not have a higher probability of dying at home (adjusted odds ratio (adj-OR) 0.8 (95% CI 0.5-1.2/1.3)). Dying of haematological cancers (adj-OR 0.3 (95% CI 0.2-0.7)) and non-cancerous conditions (adj-OR 0.5 (95% CI 0.3-0.7)) was associated with lower odds for home death compared to dying of solid tumours. However, being an immigrant was negatively associated with home death (adj-OR 0.6 (95% CI 0.4-0.9)). Moreover, a tendency was also found that being older, male, living outside the capital and in more urban areas were notable in relation to home death, however, not statistically significant.Conclusions: The fact that household income was not associated with dying at home may be explained by the Danish tax-financed healthcare system. However, having haematological cancers, non-cancerous conditions or being an immigrant were associated with lower odds for home death. Cultural differences along with heterogeneous trajectories may partly explain these differences, which should be considered prospectively. What is Known: • Prior studies have shown disparities in place-of-death of terminally ill children with diagnosis, ethnicity and socio-economic position as key factors. • Danish healthcare is tax-financed and in principle access to healthcare is equal; however, disparities have been found in the intensity of treatment of terminally ill children. What is New: • In a tax-financed, equal-access healthcare system, children died just as frequently at home in families with low as high household income. • Disparities in home death were related to diagnosis and immigrant status.

Disparities in intensity of treatment at end-of-life among children according to the underlying cause of death.

AIM: To compare indicators of high-intensity treatment at end-of-life (HI-EOL) among children according to causes of death. METHODS: We conducted a nationwide registry study in Denmark among 938 children of 1-17 years of age who died from natural causes from 2006 to 2016. We identified and compared indicators of HI-EOL within the last month of life across diagnoses. Indicators were hospital admissions, days in hospital, intensive care unit admission, mechanical ventilation, and hospital death. RESULTS: Proportions of each indicator of HI-EOL ranged from 27% to 75%. The most common indicators were hospital death (75%) and ICU admission (39%). Compared to children with solid tumours, children with non-cancerous conditions had an adjusted odds ratio of 3.5 (95% CI 2.1-5.9) of having ≥3 indicators of HI-EOL within the last month of life and children with haematological cancer had an odds ratio of 11.8 (95% CI 6.1-23.0). CONCLUSION: The underlying diagnosis was strongly associated with HI-EOL. Children who died from solid tumours experienced substantially less intensive treatment than both children with haematological cancer and non-cancerous conditions did. Across non-cancerous diagnoses, the intensity of treatment appeared consistent, which may indicate, that the awareness of palliative care is higher among oncologists than within other paediatric fields.

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.

Predictors for place of death among children:A systematic review and meta-analyses of recent literature.

Through a systematic review and meta-analyses, we aimed to determine predictors for place of death among children. We searched online databases for studies published between 2008 and 2019 comprising original quantitative data on predictors for place of death among children. Data regarding study design, population characteristics and results were extracted from each study. Meta-analyses were conducted using generic inverse variance method with random effects. Fourteen cohort studies met the inclusion criteria, comprising data on 106,788 decedents. Proportions of home death varied between countries and regions from 7% to 45%. Lower age was associated with higher odds of hospital death in eight studies (meta-analysis was not possible). Children categorised as non-white were less likely to die at home compared to white (pooled OR 0.6; 95% CI 0.5-0.7) as were children of low socio-economic position versus high (pooled OR 0.7; 95% CI 0.6-0.9). Compared to patients with cancer, children with non-cancer diagnoses had lower odds of home death (pooled OR 0.5; 95% CI 0.5-0.5).Conclusion: Country and region of residence, older age of the child, high socio-economic position, 'white' ethnicity and cancer diagnoses appear to be independent predictors of home death among children. What is Known: • Home is often considered an indicator of quality in end-of-life care. • Most terminally ill children die in hospitals. What is New: • Through a systematic review and meta-analyses, this study examined predictors for place of death among children. • Country and region of residence, older age of the child, high socio-economic position, white ethnicity and having a cancer diagnosis appear to be independent predictors of home death among terminally ill children.

Poor physical and mental health predicts prolonged grief disorder: A prospective, population-based cohort study on caregivers of patients at the end of life.

BACKGROUND: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking. AIM: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers' health status during caregiving predict prolonged grief disorder. DESIGN: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education. SETTING/PARTICIPANTS: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement (n = 2125). RESULTS: The SF-36 subscale 'role-physical' concerning role limitations due to physical health, the 'mental health' component score, and all 'mental health' subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04-1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07-1.11)) predicted prolonged grief disorder. CONCLUSION: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support.

Geographical variation in palliative cancer care in a tax-based healthcare system: drug reimbursement in Denmark.

BACKGROUND: In Denmark, a tax-based universal healthcare setting, drug reimbursement for terminal illness (DRTI) should be equally accessible for all terminally ill patients. Examining DRTI status by regions provides new knowledge on inequality in palliative care provision and associated factors. This study aims to investigate geographical variation in DRTI among terminally ill cancer patients. METHODS: We linked socioeconomic and medical data from 135 819 Danish cancer decedents in the period 2007-15 to regional healthcare characteristics. We analyzed associations between region of residence and DRTI. Prevalence ratios (PR) for DRTI were estimated using generalized linear models adjusted for patient factors (age, gender, comorbidity and socioeconomic profile) and multilevel models adjusted for both patient factors and regional healthcare capacity (patients per general practitioner, numbers of hospital and hospice beds). RESULTS: DRTI allocation differed substantially across Danish regions. Healthcare capacity was associated with DRTI with a higher probability of DRTI among patients living in regions with high compared with low hospice bed supply (PR 1.13, 95% CI 1.10-1.17). Also, the fully adjusted PR of DRTI was 0.94 (95% CI 0.91-0.96) when comparing high with low number of hospital beds. When controlled for both patient and regional healthcare characteristics, the PR for DRTI was 1.17 (95% CI 1.14-1.21) for patients living in the Central Denmark Region compared with the Capital Region. CONCLUSION: DRTI status varied across regions in Denmark. The variation was associated with the distribution of healthcare resources. These findings highlight difficulties in ensuring equal access to palliative care even in a universal healthcare system.

Antiemetic use of olanzapine in patients with advanced cancer: results from an open-label multicenter study.

INTRODUCTION: The antipsychotic drug olanzapine is effective against chemotherapy-induced nausea and targets multiple receptors known to be involved in the emetic reflex arch. The drug has a mean half-life of 30 h, which allows for a single daily administration and is therefore of interest in patients with advanced cancer suffering from nausea. OBJECTIVES: To investigate the antiemetic effect and tolerability of olanzapine in patients with advanced cancer not receiving chemotherapy or irradiation. METHODS: Patients with advanced cancer (no curable treatment options) with at least "moderate" nausea and/or one emetic episode within the last 24 h were included if they had not received chemotherapy or irradiation (last 2 weeks) and had no reversible causes of nausea/vomiting. Patients were administered 10 mg olanzapine daily for 5 days (the first day subcutaneously and the following 4 days orally). Nausea, vomiting, and adverse effects were assessed daily for 7 days. The primary efficacy parameter was nausea after 24 h. RESULTS: Forty patients from four centers were included and all evaluable after 24 h. Thirty-six patients experienced some degree of improvement. The mean two-item N/V score (0-100) at baseline was 66 and improved to 21 and 24 after 24 h and 7 days, respectively. During the course of the study, the dose of olanzapine was reduced in three patients due to adverse events. Five patients were withdrawn from the study primarily due to progression of malignant disease or per patient's request. CONCLUSIONS: Olanzapine appears effective and tolerable as an antiemetic in patients with advanced cancer. Future research should examine a lower dose (5 or 2.5 mg), preferably in a randomized controlled trial.

The nature of nausea: prevalence, etiology, and treatment in patients with advanced cancer not receiving antineoplastic treatment.

BACKGROUND: The prevalence of nausea/vomiting in patients with advanced cancer has a wide range. Due to a very low level of evidence regarding antiemetic treatment, current guidelines recommend an etiology-based approach. The evidence for this approach is also slim and research is urgently needed. OBJECTIVES: (Part One) to elucidate the prevalence of nausea and the possible associations with sociodemographic and clinical variables and (Part Two) to investigate possible etiologies of nausea and antiemetic treatments initiated in patients with nausea. METHODS: Patients with advanced cancer and no recent antineoplastic treatment were included in a prospective two-part study. In Part One, patients completed an extended version of the EORTC QLQ-C15-PAL. Nauseated patients could then be included in Part Two in which possible etiologies and antiemetic treatment were recorded and a follow-up questionnaire was completed. RESULTS: Eight hundred twenty-one patients were included and 46% reported any degree of nausea. Younger age and female sex were associated with a higher degree of nausea. Common etiologies included constipation, opioid use, and "other," and treatments associated with a statistically significant decrease in nausea/vomiting were olanzapine, laxatives, corticosteroids, domperidone, and metoclopramide. CONCLUSION: Nausea was a common symptom in this patient population and many different etiologies were suggested. Most patients reported a lower degree of nausea at follow-up. More research in treatment approaches and specific antiemetics is strongly needed.

What socio-economic factors determine place of death for people with life-limiting illness? A systematic review and appraisal of methodological rigour.

BACKGROUND: Socio-economic factors play important roles in place of death. However, up-to-date knowledge on socio-economic determinants for place of death is warranted including analysis of collinearity between socio-economic determinants. AIM: To examine associations between socio-economic determinants (social class, deprivation level in area of residence, income, education, occupation, urbanisation) and place of death among adult patients with life-limiting illnesses. Furthermore, to describe how these factors are operationalised and examined for collinearity. DESIGN: A systematic review was performed (PROSPERO, record: CRD42018091218) and quality was assessed using the Newcastle-Ottawa Scale. DATA SOURCES: A comprehensive search of PubMed, Embase, CINAHL, Scopus and PsycINFO was conducted for studies published from 1 January 2008 until the date of the search (23 March 2018) in English or Scandinavian languages. RESULTS: Of the 1599 unique citations identified, 34 studies were eligible. Dying at home was to a high degree associated with better financial situation and living in rural areas. Furthermore, hospital death was associated with a high level of deprivation in the area of residence and being employed. Regarding educational level, we found mixed and inconclusive results. CONCLUSION: Inequalities concerning place of death were found, and attention towards socio-economic inequality concerning place of death is necessary, especially in patients with a poor financial status, patients living in deprived and metropolitan areas and patients who are employed. Furthermore, we found a low degree of assessment for collinearity and adjustment of socio-economic variables. These issues should be considered in planning of future studies of socio-economic determinants for place of death.

Measuring the quality of end-of-life care: Development, testing, and cultural validation of the Danish version of Views of Informal Carers' Evaluation of Services-Short Form.

BACKGROUND: The perspectives of patients and relatives are important in the improvement of the quality of health care. However, the quality of end-of-life care has not been systematically evaluated in Scandinavia. AIM: To develop or adapt and subsequently validate a questionnaire assessing the quality of end-of-life care in Denmark. The questionnaire was intended for bereaved relatives in order to assess the quality of care in the last 3 months of the patient's life and the circumstances surrounding death. DESIGN AND DATA SOURCES: Based on the literature and interviews with 15 bereaved relatives and 17 healthcare professionals, relevant topics to include in a questionnaire were identified. The topics were prioritized by 100 bereaved relatives and subsequently compared to existing questionnaires. The chosen questionnaire was tested by cognitive interviews with 36 bereaved relatives. RESULTS: Most of the important topics were covered by the Views of Informal Carers' Evaluation of Services-Short Form, but not all Danish settings (e.g. home care by a palliative team) were covered. These settings were added to the Views of Informal Carers' Evaluation of Services-Short Form, and a few adaptations were made before a Danish version of the Views of Informal Carers' Evaluation of Services-Short Form was tested by cognitive interviews. This cultural validation showed that the slightly adapted Danish version was perceived as relevant, understandable, and acceptable. Furthermore, the cognitive interviews gave insight in the comprehension and interpretation of Views of Informal Carers' Evaluation of Services-Short Form items. CONCLUSION: With a few adaptations, the British Views of Informal Carers' Evaluation of Services-Short Form was relevant in a Danish setting.

Propensity for paying home visits among general practitioners and the associations with cancer patients' place of care and death: a register-based cohort study.

BACKGROUND: Previous studies of associations between home visits by general practitioners and end-of-life care for cancer patients have been subject to confounding. AIM: To analyse associations between general practitioners' propensity to pay home visits and the likelihood of hospitalisation and dying out of hospital among their cancer patients. DESIGN: A national register cohort study with an ecological exposure. Standardised incidence rates of general practitioner home visits were calculated as a measure for propensity. Practices were grouped into propensity quartiles. Associations between propensity groups and end-of-life outcomes for cancer patients aged 40 or above were calculated. SETTING/PARTICIPANTS: Danish general practitioners and citizens aged 40 or above were included from 2003 to 2012. RESULTS: We included 2670 practices with 2,518,091 listed patients (18,364,679 person-years); of whom 116,677 died from cancer. General practitioners were grouped into quartiles based on the general practitioners' propensity to pay home visits, which varied 6.6-fold between quartiles. Cancer patients in Group 4 (highest propensity) were less hospitalised than patients in Group 1 (lowest propensity): odds ratio: 1.13 (95% confidence interval: 1.08; 1.17) for ⩽3 bed-days and odds ratio: 0.95 (0.91-0.99) for ⩾20 bed-days. Group 4 patients were more likely to die out of hospital (odds ratio: 1.20 (1.16; 1.24)) than Group 1 patients. CONCLUSION: We found a dose-response-like association between general practitioners' higher propensity to pay home visit and their patients' likelihood of less end-of-life hospitalisation and more often dying out of hospital.

Development, modelling, and pilot testing of a complex intervention to support end-of-life care provided by Danish general practitioners.

BACKGROUND: Most patients in end-of-life with life-threatening diseases prefer to be cared for and die at home. Nevertheless, the majority die in hospitals. GPs have a pivotal role in providing end-of-life care at patients' home, and their involvement in the palliative trajectory enhances the patient's possibility to stay at home. The aim of this study was to develop and pilot-test an intervention consisting of continuing medical education (CME) and electronic decision support (EDS) to support end-of-life care in general practice. METHODS: We developed an intervention in line with the first phases of the guidelines for complex interventions drawn up by the Medical Research Council. Phase 1 involved the development of the intervention including identification of key barriers to provision of end-of-life care for GPs and of facilitators of change. Furthermore the actual modelling of two components: CME meeting and EDS. Phase 2 focused on pilot-testing and intervention assessment by process evaluation. RESULTS: In phase 1 lack of identification of patients at the end of life and limited palliative knowledge among GPs were identified as barriers. The CME meeting and the EDS were developed. The CME meeting was a four-hour educational meeting performed by GPs and specialists in palliative care. The EDS consisted of two parts: a pop-up window for each patient with palliative needs and a list of all patients with palliative needs in the practice. The pilot testing in phase 2 showed that the CME meeting was performed as intended and 120 (14%) of the GPs in the region attended. The EDS was integrated in existing electronic records but was shut down early for external reasons; 50 (5%) GPs signed up. The pilot-testing demonstrated a need to strengthen the implementation as attending rate was low in the current set-up. CONCLUSION: We developed a complex intervention to support GPs in providing end-of-life care. The pilot-test showed general acceptance of the CME meetings. The EDS was shut down early and needs further evaluation before examining the whole intervention in a larger study, where evaluation could be based on patient-related outcomes and impact on end-of-life care. TRIAL REGISTRATION: Clinicaltrials.gov ( NCT02050256 ) January 30, 2014.

Asking terminally ill patients about their preferences concerning place of care and death.

BACKGROUND: Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD). AIM: The aim of this study was to examine possible differences between pragmatic and ideal preferences of terminally ill patients, as well as differences between asking patients about preferences concerning PoC and PoD. METHODS: Structured interviews were performed with terminally ill cancer patients at inclusion and a follow-up questionnaire was completed 1 month later. Answers were compared using kappa (k) statistics and Pearson's c2-test. RESULTS: Among 96 cancer patients, agreement between pragmatic and ideal preferences was statistically significantly different (p=<0.001). Agreement between preferences for PoC and PoD was high (k:0.76-0.85). CONCLUSION: Differences exist between pragmatic and ideal EoL preferences, whereas preferences for PoC and PoD were found to be similar. These findings highlight the importance of the phrasing of questions when uncovering patients' preferences for EoL care.