BackgroundMost patients end their life with general palliative care offered by healthcare providers in non-palliative care focused/specialized departments. The state of how this care is organized and adherence to the Danish board of health recommendations is largely unknown.ObjectiveThe aim of this study is to describe the organization and clinical practice for general palliative care in Danish hospitals and to explore the association between attitudes and clinical practice.DesignThe study is a cross-sectional survey of hospital departments in Denmark with a partial comparison to a survey one decade earlier. Analyses were descriptive and logistic regression.ParticipantsThe questionnaire was sent to one randomly assigned chief of all 360 clinical hospital departments in Denmark.Key resultsThe response rate was 73%. Physical symptoms were addressed by 96% and spiritual problems by 56%. The proportion of departments that prioritized resources for general palliative care increased from 24% in 2013 to 51% in 2023. Assessment of needs for general and specialized palliative care was mostly based on a general appraisal. In multivariable logistic regression analyses, the medical departments were more likely to perform needs assessment than the surgical departments, and the attitude towards systematic needs assessment was associated with the clinical practice and planning end-of-life care in the department. The responsibility for planning end-of-life care was regarded as shared among several stakeholders.ConclusionsGeneral palliative care was focused on physical symptoms and assessment of target group and needs were rarely performed systematically despite national recommendations. Clinical practice was associated with specialty and attitudes.

RationaleThere is a lack of knowledge on symptoms and problems among non-cancer patients with life-threatening disease and how they differ from symptoms and problems experienced by cancer patients. It is important to use Patient Reported Outcome Measures (PROM) to get the patients' own experience of their symptoms and problems because clinicians may overlook symptoms.Aim and ObjectivesTo compare symptoms and problems reported on the PROM - questionnaire 'PRO-Pall' by patients with life-threatening cancer to patients with life-threatening kidney-, heart - and lung diseases.MethodThe PRO-Pall data was gathered in real world practice by health professionals and it was used outside specialist palliative care among patients with life-threatening kidney-, heart-, lung, and cancer disease in three municipalities, three general practices, a research clinic, and eight hospital departments. Multivariate logistic regression assessed the odds ratio of symptoms and problems for non-cancer patients compared to cancer patients, adjusted for age and gender.ResultsThe study included 310 patients (8% kidney, 14% heart, 41% lung, 37% cancer,) with a mean age of 70.3 years. The initial results indicated that non-cancer patients had less severe physical symptoms, better emotional functioning, and better quality of life compared to cancer patients.ConclusionThe study offers initial insights into the symptoms and problems experienced by patients with life-threatening kidney, heart, lung, and cancer diseases. The initial results showed that cancer patients experienced more severe levels of various symptoms and problems compared to patients with life-threatening lung, heart, and kidney diseases.

BACKGROUND:Patients with a life-threatening disease often experience palliative care needs (symptoms and problems) before death, and those with the most complex needs should be those who get access to specialized palliative care. To examine if that is the case, studies are needed comparing palliative care needs of patients with life-threatening cancer and non-cancer diseases admitted to specialized palliative care to patients receiving basic palliative care. AIMS:To compare palliative care needs among patients with a life-threatening disease admitted to specialized palliative care and patients receiving basic palliative care. DESIGN:A secondary data analysis of symptoms/problems reported by patients in basic palliative care or at admittance to specialized palliative care in Denmark. Ordinal logistic regression was performed to study differences in the probability of experiencing each symptom/problem among patients receiving specialized palliative care vs. basic palliative care, controlled for possible confounders. SETTING/PARTICIPANTS:Patients with a life-threatening disease who completed the EORTC QLQ-C15-PAL questionnaire. RESULTS:The study included 6367 patients. The odds of experiencing symptoms, impaired physical functioning, impaired emotional functioning, and poor quality of life were higher at admittance to specialized palliative care compared to an ongoing basic palliative care, especially impaired physical functioning (OR 8.3, 95% CI 6.6-10.5) and fatigue (OR 5.1, 95% CI 4.1-6.5). CONCLUSIONS:Patients in specialized palliative care had higher levels of symptoms and problems than patients with a life-threatening disease receiving basic palliative care, especially non-cancer patients. Future research should study changes in symptoms/problems during the disease trajectory among patients with life-threatening diseases to improve referrals to specialized palliative care.

AIMS:(a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings.METHODS:A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives.RESULTS:The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation.CONCLUSIONS:Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers.

Introduction: Existing estimates of PD prevalence in Denmark are lower than those in the rest of Europe and are based on identification via single registries. Hence, are aim was to use a combined registry/self-report survey approach to identify people with PD and also investigate whether using different registry methods led to differences in the accuracy, completeness and characteristics of the identified cohorts. Methods: This study had a cross-sectional design using routinely collected health registry data to identify adults, >= 18 years of age and resident in Denmark, with PD from either the Danish National Patient (DNP) registry or Danish Prescription Medicines (DPM) registry. Those identified were asked to confirm their PD diagnosis using a national self -report survey. Results: 13,433 people were identified potentially as having PD via the DNP or DPM registry and sent a survey. Of these, 9094 responded (68 %) of which 85 % confirmed they had PD (n = 7763; 194/100,000; 95%CI:7650-7876). When adjusting for non -respondents, assuming an equal rate of confirmation in respondents and non -respondents, estimated Danish PD population was 11,467 (198.4/100,000; 95 % CI:197.2-199.6). Identification of people using those found in both registries led to 98 % confirming they had PD versus using one registry: DNP 93 % and DPM 88 %. No clear differences in sociodemographic characteristics were found between different registry identification methods. Conclusions: Estimated PD population in Denmark was significantly higher than previous Danish estimates and close to existing estimates in other European countries. The most accurate PD population was identified when including those found in both the DNP and DPM registries.

Parkinson’s disease (PD) is the second most common age-related neurodegenerative disease after Alzheimer’s disease. Cognitive impairments are frequent non-motor symptoms in PD and have a significant impact on everyday life and well-being. Still, rehabilitation services for people with PD predominantly target motor symptoms. Drawing on data from a national Danish survey, this study aimed to determine significant differences among people living with PD with or without perceived cognitive impairments regarding (1) contact with different healthcare professionals, and (2) unmet needs for rehabilitation services. Data were analyzed based on whether the person with PD perceived cognitive impairments or not. Statistically significant differences between results for PD patients with and without cognitive impairments were calculated. Data on 6711 individuals with PD were included in the study. Respondents’ mean age was 73.5 years, and 31% of them were experiencing cognitive impairments. Significantly more people with PD and cognitive impairments were in contact with almost all professionals compared to those without cognitive impairments. However, individuals experiencing cognitive impairments were less often in contact with the professions most experienced in cognitive rehabilitation.

AimLong-term cognitive decline after out-of-hospital cardiac arrest (OHCA) is still poorly understood. This study describes long-term observer-reported cognitive decline among Danish OHCA survivors, including differences in years since the event, and investigates characteristics and self-reported outcomes associated with observer-reported cognitive decline.MethodsAdults who survived an OHCA from 2016 to 2019, and their relatives, completed the national DANish Cardiac Arrest Survivorship survey. Relatives completed the Informant Questionnaire on Cognitive Decline in the Elderly, Cardiac Arrest version (IQCODE-CA), the Hospital Anxiety and Depression Scale (HADS) and the World Health Organisation-Five Well-being index; and survivors completed the Two Simple Questions (everyday activities and mental recovery), the Modified Fatigue Impact Scale, HADS, and the Short World Health Organisation Disability Assessment Schedule 2.0. Potential associations between survivor characteristics and the IQCODE-CA were investigated using a multivariable logistic regression model. Self-reported outcomes among survivors and relatives, and the association with IQCODE-CA scores were investigated using separate logistic regression models.ResultsTotal median IQCODE-CA score was 3.04 (IQR: 3.00-3.27), with 47% having possible cognitive decline (score ≥3.04), consistent across time groups. Increasing age (OR 0.98, 95% CI: 0.97-0.99) and worse self-reported mental and physical outcomes for survivors and relatives, except ‘everyday activities’ were significantly associated with possible cognitive decline among survivors.ConclusionsNearly half of OHCA survivors may suffer long-term cognitive decline. Worse self-reported mental and physical outcomes among survivors and their relatives are associated with potential cognitive decline emphasising the need for post-OHCA care to include systematic neurocognitive assessment, tailored support and effective rehabilitation.

AIMS:Based on selected themes from a national survey, the study aims to describe and analyse similarities and differences in community-based palliative care provided to people living at home in two different care settings - the nursing home setting and the home care setting.METHODS:Responses from four palliative care themes covered by a national survey sent to 717 managers in municipality-based care units were used. The themes were: (a) target groups in palliative care; (b) wishes for end-of-life care; (c) tools/guidelines in palliative care; and (d) palliative care provided to relatives.RESULTS:The response rates were 53% in the nursing home setting and 69% in the home care setting (69%). Both settings had target groups for palliative care, in which significantly more units in the home care settings cared for people with other cultural backgrounds or children. Wishes for end-of-life care were addressed by more than 90% of the units in both settings. There were significantly more nursing home units that addressed questions regarding resuscitation, decision making when you are incapable of making decisions for yourself, and the level of medication. In both settings, around half of the units did not use or did not know if they used tools/guidelines to identify palliative care needs. Half of home care and 65% of nursing home settings did not/were unaware of providing palliative care to relatives.CONCLUSIONS:Both settings serve target populations for palliative care with few differences. Identifying palliative care needs seemed to be a low priority in both settings. A difference was found between the settings regarding end-of-life care questions and palliative care promotion to relatives.

INTRODUCTION:Equal access to healthcare is a fundamental principle in the fully tax-financed Danish healthcare system. This study reveals whether this system lives up to the principle of equal access when it comes to the rehabilitation of patients who have major lower extremity amputations.METHODS:With the aim of exploring possible inequality in rehabilitation for patients having major lower extremity amputation in Denmark, a nationwide electronic survey was conducted in the autumn of 2020, which included all hospitals and municipalities in Denmark.RESULTS:Eighty six percent of hospitals (n = 19) and 97% (n = 95) of municipalities responded. Of the 32% (n = 6) of hospitals and 78% (n = 74) of municipalities that provided prosthesis rehabilitation, the majority (hospitals 50% /municipalities 91%) provided prostheses for <10 patients in 2019, and 36% reported having competencies at only a general level among physiotherapists performing prosthetic training. Psychosocial rehabilitation modalities were lacking overall.CONCLUSIONS:This national study documents pronounced geographic inequality in access to qualified rehabilitation services for the relatively few patients undergoing lower extremity amputations in Denmark. The decentralised organisation of amputation rehabilitation makes it difficult to build and maintain specialist competencies among healthcare professionals. Inconsistent availability of psychosocial rehabilitation modalities of all kinds found in this study points to a need for action particularly among patients not in prosthetic rehabilitation where palliative needs should also be considered.

BACKGROUND:Persistent and severe low back pain is challenging to treat. Multidisciplinary care with systematic follow-up may be more effective than usual care. However, such a model has yet to be developed and tested.OBJECTIVE:Our objectives were to develop and test the feasibility of a three-month multidisciplinary intervention with systematic follow-up in a specialized hospital spine center for patients with severe and persistent low back pain.METHODS:Using the Medical Research Council and National Institute for Health and Care Research framework for the development and testing of complex interventions, we developed a multidisciplinary intervention with systematic follow-up and tested its feasibility, using a-priori-determined outcomes during three months for 24 patients seen at a regional diagnostic spine center unit. As part of the evaluation, we conducted semi-structured interviews with participants and a focus-group interview with clinicians.RESULTS:Of the 24 patients included, only 17 completed the course of care and provided complete data for feasibility assessment. We failed to reach our a-priori feasibility outcomes, had difficulty with inclusion, and participants did not find the intervention effective or satisfactory.CONCLUSIONS:The intervention was not feasible as barriers existed on multiple levels (e.g., clinical, administrative, and patient). Excessive study moderations must be made before the intervention is feasible in a randomized trial.

AIMS:Out-of-hospital cardiac arrest (OHCA) survivors may suffer short-term fatigue, psychological, cognitive and disability problems, but we lack information on the proportion of survivors with these problems in the long-term. Hence, we investigated these problems in survivors 1-5 years post-OHCA and whether the results are different at different time points post-OHCA. METHODS:All adults who survived an OHCA in Denmark from 2016 to 2019 were identified using the Danish Cardiac Arrest Registry and invited to participate in a survey between October 2020 and March 2021. The survey included the Modified Fatigue Impact Scale, Hospital Anxiety and Depression Scale, "Two simple questions" (everyday activities and mental recovery), and the 12-item World Health Organisation Disability Assessment Schedule 2.0. To investigate results at different time points, survivors were divided into four time-groups (12-24, 25-36, 37-48 and 49-56 months post-OHCA). Differences between time-groups were determined using the Kruskall-Wallis test for the mean scores and Chi-square test for the proportion of survivors with symptoms. RESULTS:Total eligible survey population was 2116, of which 1258 survivors (60 %) responded. Overall, 29 % of survivors reported fatigue, 20 % anxiety, 15 % depression, and 27 % disability. When survivors were sub-divided by time since OHCA, no significant difference was found on either means scores or proportion between time groups (p = 0.28 to 0.88). CONCLUSION:Up to a third of survivors report fatigue, anxiety, depression, reduced mental function and disability 1-5 years after OHCA. This proportion is the same regardless of how much time has passed supporting early screening and tailored post-OHCA interventions to help survivors adapt to their new situation.

Introduction The number of out-of-hospital cardiac arrest (OHCA) survivors is increasing. However, there remains limited knowledge on the long-term physical and psychological problems suffered by survivors and their relatives. The aims of the DANCAS (DANish cardiac arrest survivorship) survey are to describe the prevalence of physical and psychological problems, identify predictors associated with suffering them and to determine unmet rehabilitation needs in order to make recommendations on the timing and content of future rehabilitation interventions.Methods and analysis The DANCAS survey has a cross-sectional design involving a survey of OHCA survivors and their relatives. OHCA survivors will be identified through the Danish Cardiac Arrest Registry as having suffered an OHCA between 1 January 2016 and 31 December 2019. Each survivor will be asked to identify their closest relative to complete the relatives’ survey. Contents of survivor survey: EQ-5D-5Level, Hospital Anxiety and Depression Scale, Two Simple Questions, Modified Fatigue Impact Scale, 12-item WHO Disability Assessment Scale 2.0, plus questions on unmet rehabilitation and information needs. Contents of relatives’ survey: World Health Organisation-Five Well-Being Index, Hospital Anxiety and Depression Scale, Informant Questionnaire on Cognitive Decline in the Elderly—Cardiac Arrest and the Modified Caregiver Strain Index. Self-report outcome data collected through the surveys will be enriched by data from Danish national registries including demographic characteristics, circumstances of cardiac arrest and comorbidities. The survey will be completed either electronically or by post December 2020–February 2021.Ethics and dissemination The study will be conducted in accordance with the Declaration of Helsinki. Surveys and registry-based research studies do not normally require ethical approval in Denmark. This has been confirmed for this study by the Region of Southern Denmark ethics committee (20192000-19). Results of the study will be disseminated via several peer-reviewed publications and will be presented at national and international conferences.

Background Eating problems frequently affect quality of life and physical, psychological and social function in patients treated for head and neck cancer (HNC). Residential rehabilitation programmes may ameliorate these adverse effects but are not indicated for all individuals. Systematic assessment of rehabilitation needs may optimise the use of resources while ensuring referral to rehabilitation for those in need. Yet, evidence lacks on which nutrition screening and assessment tools to use. The trial objectives are: 1) To test the effect of a multidisciplinary residential nutritional rehabilitation programme compared to standard care on the primary outcome body weight and secondary outcomes health-related quality of life, physical function and symptoms of anxiety and depression in patients curatively treated for HNC and 2) To test for correlations between participants’ development in outcome scores during their participation in the programme and their baseline scores in Nutritional Risk Screening 2002 (NRS 2002), the Scored Patient-Generated Subjective Global Assessment Short Form (PG-SGA SF), and M. D. Anderson Dysphagia Inventory (MDADI) and to assess sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores. Methods In a randomised controlled trial, 72 patients treated for HNC recruited through a nationwide survey will be randomised to a multidisciplinary residential nutritional rehabilitation programme or to a wait-list control group. Data are collected at baseline, three and six months. Primary outcome is change in body weight, and secondary outcomes include changes in quality of life, physical function and symptoms of anxiety and depression. Potential correlations between intervention effect and baseline scores in NRS 2002, PG-SGA-SF and MDADI will be tested, and sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores will be assessed. Discussion This is the first randomised controlled trial to test the effect of a multidisciplinary residential nutritional rehabilitation programme in patients treated for HNC. Recruitment through a nationwide survey gives a unique possibility to describe the trial population and to identify potential selection bias. As the trial will explore the potential of different nutrition screening and assessment tools in the assessment of rehabilitation needs in patients treated for HNC, the trial will create knowledge about how selection and prioritisation of nutritional rehabilitation aimed at patients treated for HNC should be offered. The results may contribute to a better organisation and use of existing resources in benefit of patients treated for HNC. Trial registration The trial is registered by The Danish Data Protection Agency (registration 2012-58-0018, approval number 18/14847) and the Regional Committees on Health Research Ethics for Southern Denmark (journal number 20182000–165). ClinicalTrials.gov Identifier: NCT03909256 . Registered April 9, 2019.

Head and neck cancer survivors frequently experience nutritional challenges, and proper rehabilitation should be offered. The trial objective was to test the effect of a multidisciplinary residential nutritional rehabilitation programme addressing physical, psychological, and social aspects of eating problems after treatment. In a randomized controlled trial, 71 head and neck cancer survivors recruited through a nationwide survey were randomized to the program or a wait-list control group. Inclusion was based on self-reported interest in participation. The primary outcome was change in body weight. Secondary outcomes included physical function, quality of life, and symptoms of anxiety and depression. Differences between groups at the 3-month follow-up were tested. No significant differences were seen in body weight change, but there were overall trends towards greater improvements in physical function (hand grip strength: p = 0.042; maximal mouth opening: p = 0.072) and quality of life (“Role functioning”: p = 0.041; “Speech problems”: p = 0.040; “Pain”: p = 0.048) in the intervention group. To conclude, a multidisciplinary residential nutritional rehabilitation program had no effect on body weight in head and neck cancer survivors with self-reported interest in participation, but it may have effect on physical function and quality of life. Further research on relevant outcomes, inclusion criteria, and the program’s effect in different subgroups is needed.

The purpose of this qualitative study was twofold: (1) to explore head and neck cancer (HNC) survivors’ experiences of everyday life with eating problems after cancer treatment and (2) to explore their experiences of participating in a multidisciplinary residential rehabilitation program with a primary focus on physical, psychological, and social aspects of eating problems after treatment. Semi-structured focus group interviews were conducted with 40 Danish HNC survivors who participated in a 5-day residential rehabilitation program with follow-up after 3 months. The transcribed interviews were analyzed through qualitative content analysis. Physical nutrition impact symptoms and unmet needs for support were frequent. Participants experienced a feeling of loss due to impaired eating abilities. Eating had become an obligation or a training situation, and the eating problems challenged the relationship with their relatives when well-meaning encouragement was perceived as a pressure. Social eating was a challenge, and this often led to social withdrawal. The residential program was a safe and supportive environment to practice eating skills, and participants benefited from meeting peers. The program provided participants with knowledge and skills that many of them had been missing during and after treatment. Eating problems after treatment have substantial effects on the everyday life of HNC survivors. A multidisciplinary residential rehabilitation program may be beneficial to meet their rehabilitation needs. The results are useful for future planning of rehabilitation services and clinical studies that may contribute to improving current clinical practice and benefit HNC survivors.