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.

Symptoms and problems reported by patients with non-cancer diseases through open-ended questions in specialist palliative care: a national register-based study.

PURPOSE: Since 2010, a comprehensive symptom/problem (S/P) assessment has been carried out in Danish specialist palliative care using the EORTC QLQ-C15-PAL questionnaire and the open-ended "Write In three Symptoms/Problems" (WISP) instrument. On WISP patients can report up to three S/Ps not included in the EORTC QLQ-C15-PAL. However, little is known about which S/Ps patients with non-cancer diseases report using WISP. Therefore, we investigated the prevalence and severity of S/Ps reported on WISP by non-cancer patients in specialist palliative care and compared these S/Ps with those previously reported by cancer patients. METHODS: This register-based study collected data from the Danish Palliative Care Database. We included adult patients with non-cancer diseases answering the EORTC QLQ-C15-PAL at admittance to specialist palliative care between 2016 and 2021. WISP responses were qualitatively categorized, and their prevalence and severity calculated. RESULTS: Of the 2323 patients with non-cancer diseases answering the EORTC QLQ-C15-PAL, 812 (34.9%) reported at least one S/P using WISP. A total of 1340 S/Ps were reported on WISP, of which 56.7% were not included in the EORTC QLQ-C15-PAL (i.e., were new). Edema, existential problems, dizziness, cough, and dysphagia were the most prevalent new S/Ps. Overall, 88.7% of the S/Ps were scored as moderate-severe. The prevalence of S/Ps reported on WISP did not significantly differ between cancer and non-cancer patients, except for existential problems, dysphagia, myoclonus, speaking problems, sweats, and vomiting. CONCLUSION: The similarities and differences in the prevalence of the most common S/Ps reported on WISP confirm that WISP improves symptom assessment regardless of patient diagnosis.

Palliative care need screening and specialised referrals fell during the COVID-19 pandemic: a nationwide register-based study.

OBJECTIVES: Few studies have examined whether access to, and quality of, specialised palliative care changed during the COVID-19 pandemic. This study investigated changes in access to and quality of specialised palliative care during the pandemic in Denmark compared to previously. METHODS: An observational study using data from the Danish Palliative Care Database combined with other nationwide registries was conducted, including 69 696 patients referred to palliative care services in Denmark from 2018 to 2022. Study outcomes included number of referrals and admissions to palliative care, and the proportions of patients fulfilling four palliative care quality indicators. The indicators assessed admissions among referred, waiting time from referral to admission, symptom screening using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) questionnaire at admission, and discussion at multidisciplinary conference. Logistic regression analysed whether the probability of fulfilling each indicator differed between the pandemic period and pre-pandemic, while adjusting for possible confounders. RESULT: Number of referrals and admissions to specialised palliative care were lower during the pandemic. The odds for being admitted within 10 days of referral was higher during the pandemic (OR: 1.38; 95% CI: 1.32 to 1.45) whereas the odds for answering the EORTC questionnaire (0.88; 95% CI: 0.85 to 0.92) and for being discussed at multidisciplinary conference (0.93; 95% CI: 0.89 to 0.97) were lower compared with pre-pandemic. CONCLUSIONS: Fewer patients were referred to specialised palliative care during the pandemic, and fewer were screened for palliative care needs. In future pandemics or similar scenarios, it is important to pay special attention to referral rates and to maintain the same high level of specialised palliative care.

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.

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.

Symptoms of advanced cancer in palliative medicine: a longitudinal study.

OBJECTIVES: This study aimed to examine the symptomatology of patients with advanced cancer at admittance to palliative care services and to investigate how the symptomatology changed during the first month, and whether these changes were associated with various patient characteristics. METHODS: In a longitudinal study in Chile, outpatients with advanced cancer completed the questionnaires European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care and the Hospital Anxiety and Depression Scale. Prevalence and severity of symptoms and problems (S/Ps) at baseline were calculated. Differences in S/P scores from baseline to follow-up were calculated overall and according to patient characteristics. Multiple linear regression was used to study the associations between patient characteristics and changes in S/P scores. RESULTS: At baseline, 201 patients answered the questionnaires and 177 completed the follow-up. Fatigue, pain and sleeping difficulties were the most prevalent S/Ps reported, and also had the highest mean scores at baseline. S/P scores at baseline varied significantly according to sex, age, civil status, residence, children, prior and current antineoplastic treatment. Emotional functioning, pain, sleeping difficulties, constipation and anxiety improved significantly during the first month of palliative care. Residence, cohabitation status, diagnosis and current antineoplastic treatment were associated with changes in S/P scores. CONCLUSIONS: Patients reported moderate-to-severe levels of S/Ps at admittance to palliative care. Several S/Ps improved the first month. Certain patient characteristics were associated with changes in S/P scores. This information may guide clinicians to more effective interventions that can improve the quality of life of patients receiving 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.

Sexual health and closeness in couples coping with advanced cancer: Results of a multicenter observational study (eQuiPe).

BACKGROUND: Cancer and its treatment can severely affect sexual health. It is unknown how this may relate to the feelings of closeness between patients and their partners. AIM: To assess the association between sexual health and closeness in the relationship in couples coping with advanced cancer. DESIGN: This study was part of a prospective multicentre longitudinal observational cohort study on experienced quality of care and quality of life in patients with advanced cancer and their relatives (eQuiPe). SETTING/PARTICIPANTS: Baseline data regarding sexual health and closeness in people with advanced cancer and their partners. RESULTS: Out of the 566 dyads, 14 were same-sex couples. Especially male partners showed an interest in sex, but more than half of all patients and partners were not sexually active. Approximately one third experienced sexual dysfunction to be a problem but did not seek specialized support (<10%). There was a positive association between own sexual satisfaction and feelings of closeness in the relationship, which was stronger for partners compared to patients (p < 0.001). Sexual satisfaction of the other person was also related to own feelings of closeness (p = 0.003). CONCLUSIONS: Couples coping with advanced cancer clearly face challenges regarding sexual health but are not likely to seek specialized support. When discussing sexual health, it is crucial that health care professionals pay attention to the aspects of sexual health that may contribute to feeling close to each other and suggest specialized care if necessary. TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Age, cancer site and gender associations with symptoms and problems in specialised palliative care: a large, nationwide, register-based study.

BACKGROUND: Patients referred to specialised palliative care are troubled by symptoms/problems, but more knowledge is needed on the level and frequency of symptoms/problems. It is also uncertain how gender, age and cancer diagnosis, respectively, are associated with symptoms/problems. AIMS: To describe symptoms/problems in patients with cancer at the start of specialised palliative care, and to study how age, gender and cancer diagnosis were associated with symptoms/problems. DESIGN: A register-based study including data from the Danish Palliative Care Database. SETTING/PARTICIPANTS: Patients with cancer who reported their symptoms/problems using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the start of specialised palliative care were included. Ordinal logistic regression was performed to test if gender, age and cancer diagnosis were associated with each symptom/problem. RESULTS: 31 771 patients with cancer were included in the study. The most prevalent and severe symptoms/problems were pain, appetite loss, fatigue, poor physical function and poor quality of life. Gender, age and cancer diagnosis were significantly associated with most symptoms/problems. The strongest associations between symptoms/problems and gender and age, respectively, were increased risk of nausea in women, as well as increased risk of poor physical function and reduced risk of sleeplessness and pain with increasing age. Patients with brain/central nervous system cancer had the lowest risk of symptoms but the highest risk of poor physical function. CONCLUSION: At the start of specialised palliative care, patients with cancer experience severe levels of symptoms, poor physical function and poor quality of life. Age, gender and diagnosis were significantly associated with most symptoms/problems, but the strength and direction of the associations differed across symptoms/problems.

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.

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.

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.

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.

Danish Palliative Care Database.

AIMS: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. STUDY POPULATION: The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. MAIN VARIABLES: The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. DESCRIPTIVE DATA: In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010-2014. Of those registered, 96% had cancer. CONCLUSION: DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness.