Danish value sets for the EORTC QLU-C10D utility instrument.

PURPOSE: In this study, we developed Danish utility weights for the European Organisation for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument based on the EORTC QLQ-C30. METHODS: Following a standardized methodology, 1001 adult participants from the Danish general population were quota-sampled and completed a cross-sectional web-based survey and discrete choice experiment (DCE). In the DCE, participants considered 16 choice sets constructed from the key 10 dimensions of the QLU-C10D and chose their preferred health state for each one. Utility weights were calculated using conditional logistic regression with correction for non-monotonicity. RESULTS: The sample (n = 1001) was representative of the Danish general population with regard to age and gender. The domains with the largest utility decrements, i.e., the domains with the biggest impact on health utility, were physical functioning (- 0.224), pain (- 0.160), and role functioning (- 0.136). The smallest utility decrements were observed for the domains lack of appetite (- 0.024), sleep disorders (- 0.057), and fatigue (- 0.064). Non-monotonicity of severity levels was observed for the domains sleep disturbances, lack of appetite, and bowel problems. Deviations from monotonicity were not statistically significant. CONCLUSION: The EORTC QLU-C10D is a relatively new multi-attribute utility instrument and is a promising cancer-specific health technology assessment candidate measure. The country-specific Danish utility weights from this study can be used for cost-utility analyses in Danish patients and for comparison with other country-specific utility data.

Differences in palliative care needs between cancer patients and non-cancer patients at the start of specialized palliative care: A nationwide register-based study.

BACKGROUND: Patients with non-cancer disease are less likely to receive specialized palliative care than cancer patients. To be able to provide the best specialized palliative care, it is important to understand palliative care needs of non-cancer patients and whether the type and level of needs differ from those of cancer patients. Large studies including both cancer and non-cancer patients, using validated needs-assessment-tools, are needed to understand differences in palliative care needs at admittance to specialized palliative care. AIMS: To compare palliative care needs at the start of palliative care for cancer and non-cancer disease. DESIGN: Six-year nationwide register-based study. SETTING/PARTICIPANTS: This study included patients from all Danish specialized palliative care services (hospice care, hospital-based palliative care, home-based palliative care, or consultation) who completed a need-assessment-questionnaire. Ordinal logistic regression was performed to study the association between diagnosis and needs. RESULTS: Cancer patients had a higher probability of receiving specialized palliative care. Of the 44,315 palliative care admissions included in this study, 93.3% were on cancer patients. Independent of diagnosis patients experienced on average six needs and high levels of fatigue and impaired physical functioning. Non-cancer patients had significantly higher odds of insomnia, fatigue and impaired emotional functioning, physical functioning, and quality of life whereas cancer patients had higher odds of pain (except for patients with neurological disease). CONCLUSIONS: The higher levels of several symptoms/problems among non-cancer patients compared to cancer patients suggests that referral to specialized palliative care should be improved for non-cancer patients perhaps by improving identification of palliative needs.

Early treatment response as predictor of long-term outcome in a clinical cohort of children with ADHD.

This study investigates early onset of treatment response as predictor of symptomatic and functional outcome 3 years after initiation of methylphenidate (MPH) administration in a naturalistic, clinical cohort of children and adolescents with ADHD. Children were followed across an initial 12-week MPH treatment trial and after 3 years, with ratings of symptoms and impairment. Associations between a clinically significant MPH treatment response in week 3 (defined as ≥ 20% reduction in clinician-rated symptoms) and in week 12 (defined as ≥ 40% reduction), and 3-year outcome were tested in multivariate linear regression models, adjusting for sex, age, comorbidity, IQ, maternal education, parental psychiatric disorder, and baseline symptoms and function. We did not have information on treatment adherence or the nature of treatments beyond 12 weeks. 148 children, mean age 12.4 years (range 10-16 years), 77% males, participated in the follow-up. We found a significant decrease in symptom score from baseline [M = 41.9 (SD = 13.2)] to 3-year follow-up [M = 27.5 (SD = 12.7), p < 0.001, and in impairment score from baseline (M = 41.6 (SD = 19.4)] to 3-year follow-up [M = 35.6 (SD = 20.2), p = 0.005]. Treatment responses in week 3 and week 12 were significant predictors of the long-term outcome of symptoms, but not of impairment at 3-year follow-up, when adjusting for other well-known predictors. Early treatment response predicts long-term outcome over and above other well-known predictors. Clinicians should follow-up patients carefully, during the first months of treatment, and detect non-responders, since there might be a window of opportunity to alter the outcome, by changing the treatment strategy.Clinical trial registration: ClinicalTrials.gov, registration number NCT04366609, April 28, 2020 retrospectively registered.

Quality of life and mental health in real-world patients with resected stage III/IV melanoma receiving adjuvant immunotherapy.

INTRODUCTION: Treatment with immune checkpoint inhibitors (ICI) has expanded into the adjuvant setting enhancing the importance of knowledge on the immune-related toxicities and their impact on health-related quality of life (HRQoL). Large phase 3 trials of patients with resected Stage III/IV melanoma found no effect on HRQoL during adjuvant immunotherapy. This study investigates how HRQoL was affected during and after adjuvant immunotherapy in a real-world setting. METHODS: Patients with resected melanoma treated with adjuvant nivolumab from 2018 to 2021 in Denmark were identified using the Danish Metastatic Melanoma Database (DAMMED). The study was performed as a nationwide cross-sectional analysis as a questionnaire consisting of six different validated questionnaires on HRQoL, cognitive function, fatigue, depression, fear of recurrence, and decision regret was sent to all patients in March 2021. To evaluate HRQoL during and after adjuvant treatment, patients were divided into groups depending on their treatment status when answering the questionnaire; patients in active treatment for 0-6 months, patients in active treatment for >6 months, patients who ended treatment 0-6 months ago, and patients who ended treatment >6 months ago. RESULTS: A total of 271/412 (66%) patients completed the questionnaire. Patients who ended therapy 0-6 months ago had the lowest HRQoL and had more fatigue. Patients in active treatment for >6 months had lower HRQoL and more fatigue than patients who started treatment 0-6 months ago. Patients ending therapy >6 months ago had higher HRQoL and less fatigue compared to patients who ended therapy 0-6 months ago. Multivariable analysis showed an association between HRQoL and treatment status, comorbidity, civil status, and employment status. CONCLUSIONS: Adjuvant nivolumab may affect some aspects of QoL, but the influence seems temporary. Patient characteristics, such as civil status, employment status, and comorbidity were associated with HRQoL.

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.

Implementation of clinical guidelines in specialized palliative care-results from a national improvement project: A national register-based study.

BACKGROUND: Knowledge about the process and the results of the implementation of clinical guidelines to improve palliative care is limited. A national project aimed at improving the quality of life of advanced cancer patients admitted to specialized palliative care services in Denmark by implementing clinical guidelines for the treatment of pain, dyspnea, constipation, and depression. AIM: To investigate the degree of clinical guideline implementation by evaluating the proportion of patients treated according to guidelines among those who qualified (i.e. reported severe symptom level) before and after the 44 palliative care services implemented the guidelines, and how often different types of interventions were provided. DESIGN: This is a national register-based study. SETTING/PARTICIPANTS: Data from the improvement project were stored in and later obtained from the Danish Palliative Care Database. Adult patients with advanced cancer admitted to palliative care between September 2017 and June 2019 who answered the EORTC QLQ-C15-PAL questionnaire were included. RESULTS: In total 11,330 patients answered the EORTC QLQ-C15-PAL. The proportions of services that implemented the four guidelines ranged 73%-93%. Among services that had implemented guidelines, the proportion of patients receiving interventions was roughly constant over time reaching between 54% and 86% (lowest for depression). Pain and constipation were frequently treated pharmacologically (66%-72%), whereas dyspnea and depression were frequently treated non-pharmacologically (61% each). CONCLUSIONS: Implementing clinical guidelines was more successful for physical symptoms than for depression. The project generated national data on interventions provided when guidelines were followed, which may be used to understand differences in care and outcomes.

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.

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.

Nausea at the start of specialized palliative care and change in nausea after the first weeks of palliative care were associated with cancer site, gender, and type of palliative care service-a nationwide study.

PURPOSE: Nausea is a common and distressful symptom among patients in palliative care, but little is known about possible socio-demographic and clinical patient characteristics associated with nausea at the start of palliative care and change after initiation of palliative care. The aim of this study was to investigate whether patient characteristics were associated with nausea at the start of palliative care and with change in nausea during the first weeks of palliative care, respectively. METHODS: Data was obtained from the nationwide Danish Palliative Care Database. The study included adult cancer patients who were admitted to palliative care and died between June 2016 and December 2020 and reported nausea level at the start of palliative care and possibly 1-4 weeks later. The associations between patient characteristics and nausea at the start of palliative care and change in nausea during palliative care, respectively, were studied using multiple regression analyses. RESULTS: Nausea level was reported at the start of palliative care by 23,751 patients of whom 8037 also reported 1-4 weeks later. Higher nausea levels were found for women, patients with stomach or ovarian cancer, and inpatients at the start of palliative care. In multivariate analyses, cancer site was the variable most strongly associated with nausea change; the smallest nausea reductions were seen for myelomatosis and no reduction was seen for stomach cancer. CONCLUSION: This study identified subgroups with the highest initial nausea level and those with the least nausea reduction after 1-4 weeks of palliative care. These latter findings should be considered in the initial treatment plan.

Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting.

PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I. METHODS: Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018-2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals' (HCPs') written documentation of the CSNAT-I, and from semi-structured interviews with HCPs. RESULTS: The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15-27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: "knowing what to expect in the future," "dealing with feelings and worries," and "understanding the illness." These domains together with "knowing who to contact if concerned" and "talking to the patient about the illness" were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue. CONCLUSION: The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs' overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive. ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.

Early, integrated palliative rehabilitation improves quality of life of patients with newly diagnosed advanced cancer: The Pal-Rehab randomized controlled trial.

BACKGROUND: Early integration of palliative care into oncology treatment is widely recommended. Palliative rehabilitation has been suggested as a paradigm which integrates enablement, self-management, and self-care into the holistic model of palliative care. AIM: We hypothesized that early integration of palliative rehabilitation could improve quality of life. DESIGN: The Pal-Rehab study (ClinicalTrials.gov NCT02332317) was a randomized controlled trial. The 12-week intervention offered by a specialized palliative care team was two mandatory consultations and the opportunity of participating in an interdisciplinary group program. Supplementary individual consultations were offered, if needed. SETTING/PARTICIPANTS: At Vejle University Hospital, Denmark, adults diagnosed with advanced cancer within the last 8 weeks were randomized 1:1 to standard oncology care or standard care plus intervention. Assessments at baseline and after six and 12 weeks were based on the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30). At baseline participants were asked to choose a "primary problem" from a list of QLQ-C30 domains. The primary endpoint was the change in that "primary problem" measured as area under the curve across 12 weeks (T-scores, European mean value = 50, SD = 10). RESULTS: In all, 288 were randomized of whom 279 were included in the modified intention-to-treat analysis (146 in the standard care group and 133 in the intervention group). The between-group difference for the primary outcome was 3.0 (95% CI [0.0-6.0]; p = 0.047) favoring the intervention. CONCLUSION: Early integration of palliative rehabilitation into standard oncology treatment improved quality of life for newly diagnosed advanced cancer patients. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT02332317, registered on December 30, 2014.

Which symptoms and problems do advanced cancer patients admitted to specialized palliative care report in addition to those included in the EORTC QLQ-C15-PAL? A register-based national study.

PURPOSE: Patients in palliative care are willing to answer short questionnaires, like the EORTC QLQ-C15-PAL; however, patients may suffer from other symptoms and problems (S/Ps) not covered by such questionnaires. Therefore, to identify which other S/Ps patients experience, in addition to those already included in the EORTC QLQ-C15-PAL, we developed a brief instrument to supplement this questionnaire named WISP (Write In three Symptoms/Problems), permitting patients to report 1-3 additional S/Ps and their severity. We aim to investigate the nature, prevalence, and severity of S/Ps reported on WISP. METHODS: A register-based study with data obtained from the Danish Palliative Care Database. This study included adults with advanced cancer admitted to specialized palliative care in Denmark, who reported S/Ps on WISP. S/Ps were categorized qualitatively, and their prevalence and severity were calculated. RESULTS: Of the 5447 patients who completed the EORTC QLQ-C15-PAL, 1788 (32.8%) reported at least one symptom/problem using WISP. In total, 2796 S/Ps were reported; 24.8% were already covered by EORTC QLQ-C15-PAL; 63.6% were new, 10.1% were diagnoses and 1.6% could not be coded. S/Ps already covered and new were grouped into 61 categories. The most prevalent S/Ps reported were (in decreasing order) pain, edema, dizziness, impaired physical or emotional function, cough, and sweats. Overall, 85% of the S/Ps were rated as moderate to severe. CONCLUSIONS: The WISP instrument strongly improves the recognition of S/Ps by combining standardization with individualization. We recommend its use for comprehensive symptom assessment alongside the EORTC QLQ-C15-PAL, and potentially also alongside the EORTC QLQ-C30.

Improving information to caregivers of cancer patients: the Herlev Hospital Empowerment of Relatives through More and Earlier information Supply (HERMES) randomized controlled trial.

PURPOSE: The newly developed "Herlev Hospital Empowerment of Relatives through More and Earlier information Supply" (HERMES) intervention systematically identifies cancer caregivers' unmet needs for information from health care professionals (HCPs) and offers them the information they lack. The aim of this study was to investigate the effect of the HERMES intervention on caregivers' perception of information, communication, attention and help from HCPs, fulfillment of care needs, and anxiety and depression. METHODS: A randomized intervention study with immediate intervention in the intervention group and delayed intervention (after follow-up) in the control group among caregivers of cancer patients starting chemotherapy. RESULTS: Totally 199 caregivers were included (intervention group, n = 101; control group, n = 98). No intervention effect was found on overall satisfaction with information from HCPs (p = 0.1687) measured by a single item from the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN) and chosen as primary outcome. However, positive effects were found on the CaTCoN subscales "Problems with the quality of information from and communication with HCPs" (p = 0.0279), "Lack of information from HCPs (HERMES)" (p = 0.0039), and "Lack of attention on the caregivers' wellbeing from HCPs" (p < 0.0001). No effect was found on the CaTCoN subscale "Need for help from HCPs", the Family Inventory of Needs subscale regarding fulfillment of care needs, or the Hospital Anxiety and Depression scale. CONCLUSIONS: Although no effect was found on overall satisfaction with information, the HERMES intervention had positive effects on the caregivers' experiences of the amount of information and attention given to them and the quality of information and communication. TRIAL REGISTRATION: ClinicalTrials.gov (Identifier: NCT02380469).

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.

Similar levels of symptoms and problems were found among patients referred to specialized palliative care by general practitioners and hospital physicians: A nationwide register-based study of 31,139 cancer patients.

BACKGROUND: Previous studies suggest that the symptomatology threshold (i.e. the level and types of symptoms) for a referral to specialized palliative care might differ for doctors in different parts of the healthcare system; however, it has not yet been investigated. AIM: To investigate if the number and level of symptoms/problems differed for patients referred from the primary and secondary healthcare sectors (i.e. general practitioner versus hospital physician). SETTING/PARTICIPANTS: Adult cancer patients registered in the Danish Palliative Care Database who reported their symptoms/problems at admittance to specialized palliative care between 2010 and 2017 were included. Ordinal logistic regression analyses were performed with each symptom/problem as outcome to study the association between referral sector and symptoms/problems, controlled for the effect of gender, age, cancer diagnosis and the specialized palliative care service referred to. RESULTS: The study included 31,139 patients. The average age was 69 years and 49% were women. Clinically neglectable associations were found between referral sector and pain, appetite loss, fatigue, number of symptoms/problems, number of severe symptoms/problems (odds ratios between 1.05 and 1.20, all p < 0.05) and physical functioning (odds ratio = 0.81 (inpatient care) and 1.32 (outpatient), both p < 0.05). The remaining six outcomes were not significantly associated with referral sector. CONCLUSION: Differences across healthcare sectors in, for example, competences and patient population did not seem to result in different symptomatology thresholds for referring patients to palliative care since only small, and probably not clinically relevant, differences in symptomatology was found across referral sectors.

Should analyses of large, national palliative care data sets with patient reported outcomes (PROs) be restricted to services with high patient participation? A register-based study.

BACKGROUND: There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. Thus, the aim of this study was to investigate whether services with low response rates should be excluded from analyses to prevent effects of possible selection bias. METHODS: Data from the Danish Palliative Care Database from 24,589 specialized palliative care admittances of cancer patients was included. Patients reported ten aspects of quality of life using the EORTC QLQ-C15-PAL-questionnaire. Multiple linear regression was performed to test if response rate was associated with the ten aspects of quality of life. RESULTS: The score of six quality of life aspects were significantly associated with response rate. However, in only two cases patients from specialized palliative care services with lower response rates (< 20.0%, 20.0-29.9%, 30.0-39.9%, 40.0-49.9% or 50.0-59.9) were feeling better than patients from services with high response rates (≥60%) and in both cases it was less than 2 points on a 0-100 scale. CONCLUSIONS: The study hypothesis, that patients from specialized palliative care services with lower response rates were reporting better quality of life than those from specialized palliative care services with high response rates, was not supported. This suggests that there is no reason to exclude data from specialized palliative care services with low response rates.

Content validation of the EORTC QLQ-C15-PAL with advanced cancer patients and health care professionals from palliative care services in Chile.

BACKGROUND: The assessment of patients' quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care. METHODS: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included. RESULTS: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items. CONCLUSIONS: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients' QOL.

Correction to: Content validation of the EORTC QLQ-C15-PAL with advanced cancer patients and health care professionals from palliative care services in Chile.

An amendment to this paper has been published and can be accessed via the original article.

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.

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

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