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.

Professionals' perspectives on caring for cancer patients with pre-existing severe mental disorders.

INTRODUCTION: Cancer trajectories among patients with pre-existing severe mental disorders (SMD) are challenging and these pateints' prognosis is poor. This study aimed at exploring barriers in cancer trajectories among patients with pre-existing SMD as experienced by Danish healthcare professionals. METHODS: Semi-structured interviews were conducted with healthcare professionals who were sampled by purposive sampling. Data were analysed using inductive qualitative content analysis. RESULTS: The participants wanted to optimise treatment, but several barriers were reported, including lack of knowledge of supportive social systems. Oncological participants experienced a lack of knowledge of psychiatric disorders and a reluctance to deal with patients with SMD among some colleagues. Furthermore, participants expressed a lack of time and continuity. CONCLUSIONS: Concerns about how to create optimal cancer care trajectories for people with pre-existing SMD exist among healthcare professionals. Even so, stigmatisation, lack of knowledge and system barriers such as a lack of time and continuity must be addressed to optimise care for this population. FUNDING: This study was funded by The Danish Cancer Society (R283-A16499). TRIAL REGISTRATION: This study is registered in the internal register of research projects of the Central Denmark Region (R. no. 1-16-02-227-21).

End-of-life care for cancer patients with pre-existing severe mental disorders-a systematic review.

BACKGROUND: Cancer patients with pre-existing severe mental disorders (SMDs) less frequently receive guideline recommended cancer treatment and have a higher cancer mortality. However, knowledge is needed concerning end-of-life care in this patient group. The aim of this systematic review was to provide an overview of the literature concerning end-of-life care in cancer patients with pre-existing SMD. METHODS: A systematic search was conducted in the following databases: PubMed, Embase and Science Direct and all results were downloaded to Endnote on 1st of September 2023. The review was registered on International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42023468571). The quality of the studies was assessed according to the Newcastle-Ottawa Scale. RESULTS: Ten studies fulfilling the inclusion criteria were included. There was a recurring pattern indicating a difference between the end-of-life care received by cancer patients with SMD, compared to those without. Cancer patients with pre-existing SMD received more palliative end-of-life care but less high-intensive-endof-life (HIEOL) care, e.g., less hospitalisations and chemotherapy at the end of life, and died less frequently at hospital. CONCLUSIONS: The study indicates that patients with pre-existing SMD and cancer more often received palliative end-of-life care and less HIEOL care compared to controls. Further research regarding the difference in end-of-life care is lacking, including the consequences of less intense HIEOL care for this patient group. Thus, further studies are needed to identify reasons for less intense HIEOL among cancer patients with pre-existing SMD.

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.

Healthcare Costs at the End of Life for Patients with Non-cancer Diseases and Cancer in Denmark.

OBJECTIVES: To examine costs of care from a healthcare sector perspective within 1 year before death in patients with non-cancer diseases and patients with cancer. METHODS: This nationwide registry-based study identified all Danish citizens dying from major non-cancer diseases or cancer in 2010-2016. Applying the cost-of-illness method, we included costs of somatic hospitals, including hospital-based specialist palliative care, primary care, prescription medicine and hospice expressed in 2022 euros. Costs of patients with non-cancer diseases and cancer were compared using regression analyses adjusting for sex, age, comorbidity, residential region, marital/cohabitation status and income level. RESULTS: Within 1 year before death, mean total healthcare costs were €27,185 [95% confidence interval (CI) €26,970-27,401] per patient with non-cancer disease (n = 109,723) and €51,348 (95% CI €51,098-51,597) per patient with cancer (n = 108,889). The adjusted relative total healthcare costs, i.e. the ratio of the mean costs, of patients with non-cancer diseases was 0.64 (95% CI 0.63-0.66) at 12 months before death and 0.91 (95% CI 0.90-0.92) within 30 days before death compared with patients with cancer. Mean costs of hospital-based specialist palliative care and hospice in the year leading up to death were €17 (95% CI €13-20) and €90 (95% CI €77-102) per patient with non-cancer disease but €1552 (95% CI €1506-1598) and €3411 (95% CI €3342-3480) per patient with cancer. CONCLUSIONS: Within 1 year before death, total healthcare costs, mainly driven by hospital costs, were substantially lower for patients with non-cancer diseases compared with patients with cancer. Moreover, the costs of hospital-based specialist palliative care and hospice were minimal for patients with non-cancer diseases.

Paediatric end-of-life care at home.

BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task. AIM: To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care. METHOD: A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used. FINDINGS: A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care. CONCLUSION: The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.

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.

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.

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.

Higher Admittance to Specialized Palliative Care for Patients with High Education and Income: A Nationwide Register-Based Study.

Background: While associations between socioeconomic position, that is, income and education and admittance to specialized palliative care (SPC) have been investigated previously, no prior national studies have examined admittance to all types of SPC, that is, hospital-based palliative care team/units and hospice. Aim: To investigate whether cancer patients' education and income were associated with admittance to SPC (hospital-based palliative care team/unit, hospice). Design: Data sources were several nationwide registers. The association between SPC and education and income, respectively, was investigated using logistic regression analyses. Setting/Participants: Patients dying from cancer in Denmark 2010-12 (n = 41,741). Results: In the study population, 45% had lower secondary school, and 6% had an academic education. Patients with an academic education were more often admitted to SPC than those having lower secondary school (odds ratio [OR] = 1.69; 95% confidence interval [CI]: 1.51-1.89). Patients in the highest income quartile (Q4) were more often admitted than those in the lowest income quartile (Q1) (OR = 1.46; 95% CI: 1.37-1.56). This association was stronger for hospice (OR = 1.67 (95% CI: 1.54-1.81)) than for admittance to hospital-based palliative care team/unit (OR = 1.23 (95% CI: 1.14-1.31)). Compared with patients who had lower secondary school and the lowest income, the OR of admittance to SPC among the most affluent academics was 1.96 (95% CI: 1.71-2.25). Conclusion: This nationwide study indicates that admittance to SPC was clearly associated with education and income. We believe that the associations indicate inequity. Initiatives to improve access for patients with low education or income should be established.

Experiencing Missing Contact With Professionals and Long Term Bereavement Outcome.

CONTEXT: The Danish health care system provides palliative care for terminally ill patients and their family caregivers. However, initiatives to support family caregivers are not systematically organized. OBJECTIVES: We aimed to examine the association between self-reported experience of missing contact to health care professionals involved in palliative care, and symptoms of grief and depression three years post-loss. METHODS: We conducted a prospective population-based survey of 3635 family caregivers to terminally ill patients. At six months follow-up, the caregivers reported whether they missed contact to the general practitioner, home care nurse, hospital staff, and/or palliative care team. Associations between missing contact and symptoms of prolonged grief (Prolonged-Grief-13) and depression (Beck Depression Inventory-II) three years after bereavement were analyzed with multivariable logistic regression analysis. RESULTS: We found that an experience of missing contact with health care professionals six months after bereavement was significantly associated with symptoms indicative of prolonged grief disorder and depression after three years. The strongest association was found for missing contact with the general practitioner with an adjusted OR = 4.0 (95%CI: 1.9;8.3) for prolonged grief and an adjusted OR = 5.2 (95% CI: 3.4;7.9) for depression. CONCLUSION: Experiencing missing contact with health care professionals shortly after bereavement was associated with adverse psychological reactions. Family caregivers may benefit from bereavement support to prevent further complications. A proactive approach with assessment of support needs and risk of complications early during the patient's illness trajectory may target support at those who needs it.

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.

Socioeconomic Disparity Trends in End-of-Life Care for Cancer and Non-Cancer Patients: Are We Closing the Gap?

Purpose: Socioeconomic disparities in end-of-life care have been reported across underlying diseases, but there is a paucity of information on potential time trends. Thus, we aimed to examine time trends in use of health-care services at the end of life according to socioeconomic position in patients dying from cancer and non-cancer diseases. Materials and Methods: We conducted a nationwide registry-based study among adults dying from cancer or non-cancer diseases (diabetes, dementia, heart failure, ischemic heart disease, stroke, chronic liver disease, and chronic obstructive pulmonary disease) in Denmark in 2006-2016. We obtained data on patients' educational level and income level and use of health-care services within three months before death. Use of health-care services according to educational level and income level was plotted by calendar year of death and compared by regression analyses adjusting for age, sex, comorbidity, cohabitation, and municipality. Results: In both cancer (n = 169,694) and non-cancer patients (n = 180,350), we found limited socioeconomic disparities and no clear temporal trends in use of hospital, intensive care, emergency room, general practice, home care nurse, and hospice. In 2006/2007, one percentage point more cancer patients with high income level compared with low income level were affiliated with hospital-based specialist palliative care (adjusted mean difference: 0.01 (95% confidence interval (CI): 0.01; 0.02)), whereas this was 12 percentage points in 2016 (adjusted mean difference: 0.12 (95% CI: 0.09; 0.14)). Conclusion: Socioeconomic disparities in specialist palliative care tended to increase over time among cancer patients but were limited and without clear time trends in use of other health-care services in both cancer and non-cancer patients.

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.

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.

Healthcare utilisation trajectories in patients dying from chronic obstructive pulmonary disease, heart failure or cancer: a nationwide register-based cohort study.

OBJECTIVES: To investigate illness trajectories as reflected by healthcare utilisation, including hospital and intensive care unit admissions, consultations in general practice and home care provision, before death comparing people dying from chronic obstructive pulmonary disease (COPD), heart failure and cancer. DESIGN: Nationwide register-based cohort study. SETTING: Data on all hospital admissions, including intensive care unit admissions, consultations in general practice and home care provision were obtained from nationwide Danish registries. PARTICIPANTS: All adult decedents in Denmark dying from COPD, heart failure or cancer between 2006 and 2016. OUTCOME MEASURES: For each day within 5 years before death, we computed a daily prevalence proportion (PP) of being admitted to hospital or consulting a general practitioner. For each day within 6 months before death, we computed PPs of being admitted to intensive care or receiving home care. The PPs were plotted and compared by regression analyses adjusting for age, gender, comorbidity level, marital/cohabitation status, municipality and income level. RESULTS: Among 1 74 086 patients dying from COPD (n=22 648), heart failure (n=11 498) or cancer (n=139 940), the PPs of being admitted to hospital or consulting a general practitioner showed similar steady progression and steep increase in the last year of life for all patient populations. The PP of being admitted to intensive care showed modest increase during the last 6 months of life, accelerating in the last month, for all patient populations. For patients with COPD and heart failure, the PP of receiving home care remained stable during the last 6 months of life but increased steadily for patients with cancer. CONCLUSION: We found limited differences in healthcare resource utilisation at the end of life for people with COPD, heart failure or cancer, indicating comparable illness trajectories.This supports the need to reconsider efforts in achieving equal access to palliative care interventions, which is still mainly offered to patients with cancer.

Early specialised palliative care: interventions, symptoms, problems.

BACKGROUND: Few studies have investigated the content of interventions provided in early specialised palliative care (SPC). OBJECTIVES: To characterise the content of interventions delivered in early SPC in the Danish Palliative Care Trial (DanPaCT), a multicentre trial with six participating sites. METHODS: A retrospective qualitative and quantitative study coding all new interventions initiated by the palliative teams and documented in the medical records during the 8-week study period of DanPaCT. Interventions were categorised according to (a) symptom/problem prompting the intervention, (b) type of intervention and (c) professional(s) providing the intervention. RESULTS: In total, 145 patients were randomised to the SPC teams. According to the medical records, patients received a median of 3.5 (range 0-22) new interventions in the 8-week intervention-period from the palliative teams. For 24 (18%) of the patients there was no documented interventions in the medical records. The most frequent symptom/problems treated were pain, (100 interventions; 20% of interventions given) and impaired physical function (62; 13% of interventions given). The most frequent type of intervention was pharmacological (232; 42% of interventions given). CONCLUSIONS: This is one of the first studies to meticulously investigate the content of interventions documented in the medical records for patients receiving early SPC. Diverse symptoms were treated with many different interventions. However, a relatively low number of interventions were documented. This may explain the lack of effect in DanPaCT but also questions whether all interventions were adequately documented TRIAL REGISTRATION NUMBER: NCT01348048.

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.

Exploring Functional Impairment in Light of Prolonged Grief Disorder: A Prospective, Population-Based Cohort Study.

Background: Functional impairment is essential in the diagnostic criteria for prolonged grief disorder (PGD) in the ICD-11. It refers to the negative impact on everyday life, including inability to maintain the usual level of functioning. We aimed to assess the extent of functional impairment, emotion-related role limitation, and impaired social functioning before and after bereavement, and to explore associations with PGD, as measured by the 13-item Prolonged Grief Scale (PGDPG13). Method: Relatives of terminally ill patients (n = 1,622) completed a questionnaire before and after bereavement. The questionnaire assessed "overall functional impairment" (PG-13 item) and "aspects of functional impairment" measured by mean scores of the 36-item Short Form Survey (SF-36) subscales emotional role and social functioning (0: worst; 100: best). We analyzed associations between PGDPG13 and functional impairment prior to bereavement using logistic regression models adjusted for age, gender, personal relation, education, time interval to patient's death, and pre-loss grief. Results: In total, 51% reported overall functional impairment before bereavement, 27% reported functional impairment at 6 months after bereavement, and 19% reported functional impairment at 3 years after bereavement. The mean emotional role score was 47.5 (95%CI: 45.4-49.7) before bereavement, increasing to 77.4 (95%CI: 75.7-79.0) at 3 years after bereavement, compared to 85.1 (95%CI: 77.6-92.6) in a reference sample. Mean social functioning score increased gradually reaching the mean of the reference sample at 3 years after bereavement. PGDPG13 was present in 26% of those with overall functional impairment at 6 months after bereavement, decreasing to 11% at 3 years after bereavement. Pre-bereavement measures of emotional role and social functioning were associated with PGDPG13at 6 months and 3 years after bereavement. Discussion: Overall functional impairment was prevalent as reflected in low scores on daily activities and social functioning compared to a reference sample. Functioning may be an important factor during caregiving and bereavement and pre-bereavement functional impairment was associated with PGDPG13. Future studies should investigate if maintaining daily activities and social functioning before bereavement could be key in early supportive care. Moreover, the role of functional impairment in bereavement interventions should be explored.

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.