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.

A comparison of health-related quality of life in chronic intestinal failure and end-stage kidney disease: A cross-sectional study.

BACKGROUND: There is inequal access to treatment and scarce evidence on how the disease burden in chronic intestinal failure (CIF) compares to other chronic nonmalignant types of organ failure. Therefore, we compared the health-related quality of life (HRQOL) of people with CIF with that of people with end-stage kidney disease (ESKD) receiving hemodialysis (HD). These groups were selected for comparison as they have similar treatment characteristics. We hypothesized that people treated with HD and people with CIF had similarly poor HRQOL. METHODS: HRQOL was evaluated and compared in a cross-sectional study of adult people with CIF and people with ESKD HD at a tertiary hospital in Denmark, using the Short-Form 36 (SF-36). RESULTS: One hundred forty-one people with CIF and 131 people with ESKD receiving HD were included in the analysis. Both groups reported low scores (<50) for HRQOL on general health, vitality, and role limitation-physical. People with ESKD receiving HD had significantly lower scores than people with CIF regarding physical functioning, general health, and vitality when adjusted for sex and age. No significant difference was found for any other SF-36 domain. CONCLUSION: HRQOL was similarly and significantly reduced in people with CIF and in people with ESKD receiving HD. People with ESKD receiving HD had significantly poorer HRQOL than people with CIF in some aspects of physical and mental health. Access to home parenteral support treatment varies among countries that typically provide HD, suggesting an inequality in healthcare based on the type of organ failure.

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.

When and how to stop palliative antineoplastic treatment and to organise palliative care for patients with incurable cancer.

BACKGROUND: Improving the organisational aspects of the delivery of palliative care in order to support patients throughout their disease trajectory has received limited attention. AIM: To investigate the opportunities and barriers related to organising palliation for people with terminal cancer and their families. METHODS: An explorative interview study was conducted among 31 nurses and three physicians concerning an intervention facilitating a fast transition from treatment at a cancer centre at a university hospital to palliation at home. A thematic analysis was conducted. FINDINGS: This article presents three out of seven themes: 1) improvement in the cessation of antineoplastic treatment in palliation; 2) improvement in organisations delivering palliation; and 3) improvement in multidisciplinary and cross-sectoral collaboration. CONCLUSIONS: The results demonstrate the demand for flexible, family-centred and integrated palliation at all levels, from communication and the collaborative relationship between healthcare professionals and families to service sectors.

Post-COVID sequelae effect in chronic fatigue syndrome: SARS-CoV-2 triggers latent adenovirus in the oral mucosa.

The post-viral fatigue syndromes long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have multiple, potentially overlapping, pathological processes. These include persisting reservoirs of virus, e.g., SARS-CoV-2 in long COVID patient's tissues, immune dysregulation with or without reactivation of underlying pathogens, such as Epstein-Barr virus (EBV) and human herpesvirus 6 (HHV6), as we recently described in ME/CFS, and possibly yet unidentified viruses. In the present study we tested saliva samples from two cohorts for IgG against human adenovirus (HAdV): patients with ME/CFS (n = 84) and healthy controls (n = 94), with either mild/asymptomatic SARS-CoV-2 infection or no infection. A significantly elevated anti-HAdV IgG response after SARS-CoV-2 infection was detected exclusively in the patient cohort. Longitudinal/time analysis, before and after COVID-19, in the very same individuals confirmed HAdV IgG elevation after. In plasma there was no HAdV IgG elevation. We conclude that COVID-19 triggered reactivation of dormant HAdV in the oral mucosa of chronic fatigue patients indicating an exhausted dysfunctional antiviral immune response in ME/CFS, allowing reactivation of adenovirus upon stress encounter such as COVID-19. These novel findings should be considered in clinical practice for identification of patients that may benefit from therapy that targets HAdV as well.

Long-term opioid treatment and endocrine measures in chronic non-cancer pain patients.

BACKGROUND: The prevalence of chronic non-cancer pain (CNCP) has increased dramatically the past decades, which combined with indiscriminate use of prescribed opioids has become a public health problem. Endocrine dysfunction may be a complication of long-term opioid treatment (L-TOT), but the evidence is limited. This study aimed at investigating the associations between L-TOT and endocrine measures in CNCP patients. METHODS: Cortisol (spot and after stimulation), thyrotropin (TSH), thyroxin (T4), insulin-like growth factor 1 (IGF-1), prolactin (PRL), 17-hydroxyprogesterone, androstenedione, dehydroepiandrosterone (DHEAS), sex hormone-binding globulin (SHBG), total testosterone (TT) and free testosterone (fT) were measured. Group comparisons were done between CNCP patients in L-TOT and controls as well as between patients on high- or low-dose morphine equivalents. RESULTS: Eighty-two CNCP patients (38 in L-TOT and 44 controls not receiving opioids) were included. Low TT (p = 0.004) and fT concentrations (p < 0.001), high SHBG (p = 0.042), low DEAS (p = 0.017) and low IGF-1 (p = 0.003) in men were found when comparing those in L-TOT to controls and high PRL (p = 0.018), low IGF-1 standard deviation score (SDS) (p = 0.006) along with a lesser, but normal cortisol response to stimulation (p = 0.016; p = 0.012) were found when comparing L-TOT to controls. Finally, a correlation between low IGF-1 levels and high opioid dose was observed (p < 0.001). CONCLUSIONS: Our study not only supports previous findings but even more interestingly disclosed new associations. We recommend future studies to investigate endocrine effects of opioids in larger, longitudinal studies. In the meanwhile, we recommend monitoring endocrine function in CNCP patients when prescribing L-TOT. SIGNIFICANCE: This clinical study found associations between L-TOT, androgens, growth hormone and prolactin in patients with CNCP compared to controls. The results support previous studies as well as add new knowledge to the field, including an association between high opioid dose and low growth hormone levels. Compared to existing research this study has strict inclusion/exclusion criteria, a fixed time period for blood sample collection, and adjustments for potential confounders, which has not been done before.

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.

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.

Home-Based Specialized Pediatric Palliative Care: A Systematic Review and Meta-Analysis.

CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model. RESULTS: We included five studies, which reported on 392 children and adolescents. Meta-analysis showed that receiving home-based SPPC was associated with a more than fourfold increased likelihood of home death (risk ratio 4.64, 95% confidence interval 3.06-7.04; 3 studies; n=296). Most studies reported improved quality of life and reduced symptom burden. The included studies were of low to moderate quality with a high risk of bias. CONCLUSION: This systematic review suggests that home-based SPPC is associated with increased likelihood of home death, and might be associated with improved quality of life and reduced symptom burden. The small number of studies and an overall high risk of bias, however, makes the overall strength of evidence low.

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.

Paediatric end-of-life care - symptoms and problems: parent assessment.

OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHODS: All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents' assessments of S&P during the last month of life were restricted to children aged 3-18 years. Data were analyses by means of descriptive statistics. RESULTS: Children ≥3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced 'mess-ups' or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death. CONCLUSION: According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered.

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.

Cohort Description: Preventing an Opioid Epidemic in Norway - Focusing on Treatment of Chronic Pain (POINT) - A National Registry-Based Study.

Aim: The POINT project aims to provide evidence to optimise chronic pain management, prevent adverse consequences of opioids, and improve chronic pain patients' pain relief, functional capacity, and quality of life. We describe the outline of the project and its work packages. More specifically, we describe a cohort of persons with chronic pain and a cohort of long-term opioid users identified from a national registry linkage. Data Sources: The project utilises data from nationwide healthcare and population registers in Norway. Using the Norwegian Prescription Database, we identified a cohort of persons who have been dispensed drugs reimbursed for chronic pain and a cohort of persons who used opioids long term from 2010 to 2019. Data from the Norwegian Registry for Primary Health Care and the Norwegian Patient Registry (2008-2019), Cancer Registry (1990-2018) Cause of Death Registry (2010-2019) and demographic and socioeconomic registers from Statistics Norway (2010-2019) were linked to the cohorts. Study Population: There were 568,869 participants with chronic pain. Sixty-three percent of the cohort was women, and the mean age was 57.1 years. There were 336,712 long-term opioid users (58.6% women; 60.9 years). In chronic pain and long-term opioid user cohorts, the most frequent musculoskeletal diagnosis was back pain diagnosed in primary care (27.6% and 30.7%). Psychiatric diagnoses were also common. Main Variables: Upcoming studies will utilise psychiatric and somatic diagnoses from the patient registers, drug use from the prescription register, causes of death, demographics, and socioeconomic status (eg, education, income, workability, immigrant status) as exposures or outcomes. Conclusion and Future Plans: The two cohorts have numerous pain-related diagnoses, especially in the musculoskeletal system, and noticeably frequent somatic and psychiatric morbidity. The POINT project also includes later work packages that explore prescriber and patient perspectives around safe and effective treatment of chronic pain.

Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with myalgic-encephalomyelitis/chronic fatigue syndrome.

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease considered to be triggered by viral infections in a majority of cases. Symptoms overlap largely with those of post-acute sequelae of COVID-19/long-COVID implying common pathogenetic mechanisms. SARS-CoV-2 infection is risk factor for sustained latent virus reactivation that may account for the symptoms of post-viral fatigue syndromes. The aim of this study was first to investigate whether patients with ME/CFS and healthy donors (HDs) differed in their antibody response to mild/asymptomatic SARS-CoV-2 infection. Secondly, to analyze whether COVID-19 imposes latent virus reactivation in the cohorts. Methods: Anti-SARS-CoV-2 antibodies were analyzed in plasma and saliva from non-vaccinated ME/CFS (n=95) and HDs (n=110) using soluble multiplex immunoassay. Reactivation of human herpesviruses 1-6 (HSV1, HSV2, VZV, EBV, CMV, HHV6), and human endogenous retrovirus K (HERV-K) was detected by anti-viral antibody fingerprints in saliva. Results: At 3-6 months after mild/asymptomatic SARS-CoV-2 infection, virus-specific antibodies in saliva were substantially induced signifying a strong reactivation of latent viruses (EBV, HHV6 and HERV-K) in both cohorts. In patients with ME/CFS, antibody responses were significantly stronger, in particular EBV-encoded nuclear antigen-1 (EBNA1) IgG were elevated in patients with ME/CFS, but not in HDs. EBV-VCA IgG was also elevated at baseline prior to SARS-infection in patients compared to HDs. Conclusion: Our results denote an altered and chronically aroused anti-viral profile against latent viruses in ME/CFS. SARS-CoV-2 infection even in its mild/asymptomatic form is a potent trigger for reactivation of latent herpesviruses (EBV, HHV6) and endogenous retroviruses (HERV-K), as detected by antibody fingerprints locally in the oral mucosa (saliva samples). This has not been shown before because the antibody elevation is not detected systemically in the circulation/plasma.

Development of a systematic multidisciplinary clinical and teaching model for the palliative approaches in patients with severe lung failure.

Palliative medicine has traditionally focused on people affected by cancer with rapidly advancing disease progression. However, as more people live longer time with serious illnesses, including lung diseases, the need of palliative care for these patients if also increasing. There is a lack of research and clinical knowledge about what palliative care is for people affected by chronic obstructive pulmonary disease and interstitial lung disease. The aim of this paper is to describe the development process of an easy to use and clinically relevant model for the palliative care approach in people affected by severe illnesses. The developed model consists of four components, which originated the title" 4,2,4,2 model". Each number has a specific meaning: the first 4 = the four disease trajectories that patients may experience; 2 = the two forms of knowledge, objective, and intuitive that must be achieved by the health professionals to gain an understanding of the situation; 4 = the four dimensions of suffering physically, mentally, socially and existentially/spiritually; and 2 = the two roles that health-care professionals must be able to take in when treating patients with serious illnesses. The 4-2-4-2 model proposes an easy-to-use and clinically relevant model for palliative approach and integration of PC and pulmonary medicine. Another important purpose of this model is to provide HPs with different educational backgrounds and from different medical fields with a 'golden standard approach' to enhance the focus of the palliative approach in both the clinic and teaching. The effect and consequences of the use of the 4-2-4-2 model should be explored in future clinical trials. Furthermore, it should be investigated whether teaching the model creates a change in clinical approach to patients with serious illnesses as well as whether these changes are long-lasting.

[Specialised palliative care for children and adolescents and their families].

This is a review of palliative care for children in Denmark which remains a relatively new area. Studies have shown a high prevalence of symptoms and problems in children with life-limiting diagnoses during the last month of life. Psychological distress also seems to have high impact on their suffering. Bereaved parents had unmet needs for treatment and support both during the child's illness and after the child's death. Increased knowledge of palliative care requires a strengthened focus on clinical interventions, education and research in order to improve treatment and care for the children and their families.

Long-term opioid treatment and endocrine measures in patients with cancer-related pain: a systematic review.

OBJECTIVES: Opioid analgesics are the main stay for cancer pain management; however, long-term opioid treatment (L-TOT) may suppress the endocrine system. This systemic review aimed at investigating effects of L-TOT on the endocrine system in patients with cancer-related pain. METHODS: A search on MEDLINE, EMBASE and Web of Science databases was performed. Inclusion criteria were clinical studies investigating endocrine measures in adult patients with cancer-related pain in L-TOT (≥4 weeks). Outcomes and quality of evidence were assessed. RESULTS: A total of 252 abstracts were identified; out of which 247 were excluded and five cross-sectional studies were included and analyzed. L-TOT was associated with lower serum concentration levels of total- and free testosterone in males, follicular stimulating hormone in females, and luteinizing hormone in both sexes. Moreover, higher morphine equivalent daily doses (MEDDs) were correlated with higher levels of cortisol and lower levels of LH in both sexes, and lower levels of total- and free testosterone in males. Sexual dysfunction was associated with low sex hormone levels. Level of evidence was low/very low. CONCLUSIONS: The studies identified demonstrated that patients with cancer-related pain in L-TOT may have gonadal hypofunction causing sexual dysfunction, which may be correlated with opioid dose level. In addition, high serum concentrations of cortisol were positively correlated with high opioid dose levels. However, the evidence was weak and further research is necessary. PROSPERO, ID-number: CRD42020213059.

Patient-reported outcome measures (PROMs) and palliative-care clinician reported outcomes (ClinROs) mutually improve pain and other symptoms assessment of hospitalized cancer-patients.

OBJECTIVES: Patients with malignant diseases are known to have a high symptom burden including pain, and insufficient treatment of pain in this population has been frequently documented. To promote the integration of specialized palliative care and hematology and oncology, this study investigated disease, treatment, and comorbidity related symptoms as well as functional capacity and health-related quality of life (HQoL) by patient-reported outcome measures (PROMs) and clinician-reported outcome measures (ClinROs) among inpatients in a comprehensive cancer center. METHODS: This cross-sectional study was carried out in a large comprehensive cancer centre of both oncological and hematological inpatients. It combined the use of PROMs and ClinROs. RESULTS: A high symptom burden was reported with fatigue and appetite loss as the most frequent symptoms, and role function being the most impaired function. Further, a low HQoL score was associated with a high number of symptoms/impairments. More than half of all patients reported pain in the last 24 h. Out of 95 patients with average pain >0 in the last 24 h, 71% were treated with opioids and 24% were treated with adjuvant analgesic (AA) defined as antiepileptics, antidepressants and prednisolone. Out of 57 patients with average pain >0 in the last 24 h and possible neuropathic pain, 33% were treated with AAs. A high odds ratio for moderate/severe pain in patients with possible neuropathic pain mechanisms was observed. CONCLUSIONS AND IMPLICATIONS: This study did not only emphasize the need for systematic use of PROMs to identify symptoms and needs for inpatients, but also displayed why PROMs supported by ClinROs are a prerequisite to deliver truly individualized and high-quality patient-centered care. This study calls for continuous training of health care professionals to deliver high-quality treatment of pain. Further, it contributes to the growing recognition, that palliative care and standard care must be integrated to strengthen patient-centered care.

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.

End-of-life communication: a nationwide study of bereaved parents' perceptions.

OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses. METHODS: A national register identified the causes of death of 951 children aged 0-18 years during the period 2012-2014. A previously described classification of life-limiting diagnoses identified 402 children. A modified version of the self-administered questionnaire 'To Lose a Child' was distributed to the parents of these 402 children, capturing their perceptions of communication with the healthcare professionals throughout the child's disease trajectory and imminent death. RESULTS: A total of 193 bereaved parents, representing 38% of the identified children, participated in the study. Overall, 98% of the parents expressed the view that physicians should immediately disclose when curatively intended treatment options were exhausted. Some 79% of parents reported that information about their child's incurable illness was given in an appropriate manner; however, 42% said that information about the child's imminent death was given too late. Finally, 31% felt deprived of the option to say goodbye to their child in their preferred manner, and 56% said that their child's death was "a shock". CONCLUSIONS: Parents request accurate and timely information. However, a substantial number of the parents surveyed reported that healthcare professionals communicated too late about palliative care and end-of-life issues. Even though healthcare professionals strive to communicate effectively with dying children and their parents, barriers were identified that may hinder even the best of intentions. National guidelines addressing communication issues and improved education of healthcare professionals should form part of any future agenda.