Knud Juel

Background: People with intellectual disability (ID) have a markedly lower life expectancy than the general population, with cancer being one of the most common causes of death. This systematic review aims to provide an overview of existing knowledge on cancer diagnostics among people with ID, including cancer screening, routes to cancer diagnosis and cancer stage. Method: We systematically searched Embase, PubMed, CINAHL and PsycInfo for observational studies on cancer screening, routes to diagnosis, and cancer stage among people with ID published from 2000 onwards. Study selection and quality assessment were conducted independently by two authors. Results: Twenty‐five register‐based studies met the inclusion criteria. Sixteen consistently reported lower cancer screening participation among people with ID. Three studies found that people with ID were less likely to be diagnosed through standardized, fast‐track pathways and more likely to be diagnosed following emergency hospital contacts. Across nine studies, people with ID were more often diagnosed at advanced or unknown cancer stage than those without ID. Conclusions: People with ID experience substantial inequalities in cancer detection, including lower screening participation, less optimal diagnostic pathways and more frequent diagnosis at advanced or unknown stages. These disparities highlight the need for interventions targeting symptom recognition, diagnostic pathways and healthcare accessibility among people with ID.

It is still unclear how changes in alcohol control policies may have contributed to changes in overall levels of alcohol-attributed harm between and within the Nordic countries. We modified and applied the Bridging the Gap (BtG)-scale to measure the restrictiveness of a set of alcohol control policies for each Nordic country and each year between 1990 and 2019. Alcohol-attributed harm was measured as total and sex-specific alcohol-attributed disease burden by age-standardized years of life losts (YLLs), years lived with disability (YLDs), and disability-adjusted life-years (DALYs) per 100 000 population from the Global Burden of Disease Study (GBD). Longitudinal cross-country comparisons with random effects regression analysis were employed to explore associations, within and across countries, differentiated by sex and the time to first effect. Overall, alcohol-attributed YLLs, YLDs, and DALYs decreased over the study period in all countries, except in Iceland. The burden was lower in those countries with restrictive national policies, apart from Finland, and higher in Denmark which had the least restrictive policies. Changes in restrictiveness were negatively associated with DALYs for causes with a longer time to effect, although this effect was stronger for males and varied between countries. The low alcohol attributed disease burden in Sweden, Norway, and Iceland, compared to Denmark, points towards the success of upholding lower levels of harm with strict alcohol policies. However, sex, location and cause-specific associations indicate that the role of formal alcohol policies is highly context dependent and that other factors might influence harm as well.

Persons with intellectual disabilities (ID) face pronounced health disparities. The aim of this study was to describe premature mortality by causes of death and avoidable mortality among persons with ID compared to the general Danish population. This study is based on a Danish nationwide cohort of adults (aged 18–74 years) with ID (n = 57 663) and an age- and sex-matched reference cohort (n = 607 097) which was established by linkage between several registers. The cohorts were followed in the Register of Causes of Death between 2000 and 2020. Causes of death were categorized into preventable, treatable, or unavoidable deaths using the OECD/Eurostat classification and furthermore categorized into specific interventions. We compared the observed and expected number of deaths by calculating standardized mortality ratio (SMR). Among persons with ID the number of deaths was 9400 whereof 5437 (58%) were avoidable. SMR for preventable deaths, e.g. by reducing smoking and alcohol intake or by vaccination, was 2.62 (95% CI, 2.51–2.73), and SMR for treatable deaths, e.g. by earlier diagnosis and treatment, was 6.00 (5.72–6.29). Unavoidable mortality was also six-fold increased (SMR = 6.03; 5.84–6.22). Preventable deaths were higher for persons with mild ID compared to severe ID, while treatable and unavoidable mortality were highest for persons with severe ID. The study confirmed that persons with ID have an amplified risk of mortality across all categories. There is a need for competence development of social care and healthcare personnel and reasonable adjustment of health promotion programs and healthcare services for people with ID.

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.

Background: A paucity of resuscitation studies have examined sex differences in patient-reported outcomes upon hospital discharge. It remains unclear whether male and female patients differ in health outcomes in their immediate responses to trauma and treatment after resuscitation. Objectives: The aim of this study was to examine sex differences in patient-reported outcomes in the immediate recovery period after resuscitation. Methods: In a national cross-sectional survey, patient-reported outcomes were measured by 5 instruments: symptoms of anxiety and depression (Hospital Anxiety and Depression Scale), illness perception (Brief Illness Perception Questionnaire [B-IPQ]), symptom burden (Edmonton Symptom Assessment Scale [ESAS]), quality of life (Heart Quality of Life Questionnaire), and perceived health status (12-Item Short Form Survey). Results: Of 491 eligible survivors of cardiac arrest, 176 (80% male) participated. Compared with male, resuscitated female reported worse symptoms of anxiety (Hospital Anxiety and Depression Scale–Anxiety score ≥8) (43% vs 23%; P = .04), emotional responses (B-IPQ) (mean [SD], 4.9 [3.12] vs 3.7 [2.99]; P = .05), identity (B-IPQ) (mean [SD], 4.3 [3.10] vs 4.0 [2.85]; P = .04), fatigue (ESAS) (mean [SD], 5.26 [2.48] vs 3.92 [2.93]; P = .01), and depressive symptoms (ESAS) (mean [SD], 2.60 [2.68] vs 1.67 [2.19]; P = .05). Conclusions: Between sexes, female survivors of cardiac arrest reported worse psychological distress and illness perception and higher symptom burden in the immediate recovery period after resuscitation. Attention should focus on early symptom screening at hospital discharge to identify those in need of targeted psychological support and rehabilitation.

Aims: Increased prevalence and survival among patients with heart failure draws attention to their everyday life, including their ability to work. Many patients with heart failure withdraw from the workforce, which can affect their quality of life. The aim was to investigate patient-reported outcomes (PROs) and clinical and demographic variables as predictors of withdrawal from the workforce after admission with a diagnose of heart failure. Methods and results: Patients with heart failure, who were part of the workforce at admission were included from the national cross-sectional survey, DenHeart. Data were collected from five national heart centres in Denmark, from April 2013 to April 2014. Patient-reported outcomes measured at discharge included SF-12, HeartQoL, HADS, and ESAS. Clinical and demographic variables were obtained from registers, medical records, and index hospitalization. Patient-reported outcomes, clinical, and demographic variables were combined with labour market affiliation 3, 6, 9, and 12 months after admission. The response rate was 49.1% (n = 1517) and of those 364 patients were part of the workforce at index admission. Patients with lower QoL odds ratio (OR) 2.58 [95% confidence interval (CI) 1.24–5.37], symptoms of depression OR 2.57 (95% CI 1.47–4.50) and ejection fraction (EF) ≤35% OR 2.48 (95% CI 1.35–4.56) were more likely to withdraw from the workforce in the first year after admission. Patients with lower symptom burden OR 0.36 (95% CI 0.19–0.68) and a hospital stay of 0–2 days OR 0.18(95% CI 0.08–0.37) were less likely to withdraw. Conclusion: Low QoL, high symptom burden, symptoms of depression, a longer length of hospital stay, and low EF can predict withdrawal from the workforce in the first year after admission with heart failure.

Purpose In patients with ischemic heart disease, the objectives were (1) to explore associations between patient-reported outcomes, sociodemographic, and clinical factors at discharge and 1-year all-cause mortality and (2) to investigate the discriminant predictive performance of the applied patient-reported outcome instruments on 1-year all-cause mortality. Methods Data from the Danish national DenHeart cohort study were used. Eligible patients (n = 13,476) were invited to complete a questionnaire-package, of which 7167 (53%) responded. Questionnaires included the 12-item Short form health survey (SF-12), Hospital anxiety and depression scale (HADS), EQ-5D, HeartQoL, Edmonton symptom assessment scale (ESAS), and ancillary questions on, e.g., social support. Clinical and demographic characteristics were obtained from registers, as were data on mortality. Comparative analyses were used to investigate differences in patient-reported outcomes. Mortality associations were explored using multifactorially adjusted Cox regression analyses. Predictive performance was analyzed using receiver operating characteristics (ROC). Results Patient-reported outcomes at discharge differed among those alive versus those deceased at one year, e.g., depression (HADS-Depression ≥ 8) 19% vs. 44% (p < 0.001). Associations with 1-year mortality included feeling unsafe about returning home from the hospital; hazard ratio (HR) 2.07 (95% CI 1.2–3.61); high comorbidity level, HR 3.6 (95% CI 2.7–4.8); and being unmarried, HR 1.60 (95% CI 1.33–1.93). Best predictive performance was observed for SF-12 physical component summary (Area under the curve (AUC) 0.706). Conclusion Patient-reported health, sociodemographic, and clinical factors are associated with 1-year mortality. We propose systematic screening with robust predictive tools to identify patients at risk and healthcare initiatives to explore and offer effective treatment to modify patient-reported health indicators.

Objectives The risk of poor outcomes is traditionally attributed to biological and physiological processes in cardiac surgery. However, evidence exists that other factors, such as emotional, behavioral, social, and functional, are predictive of poor outcomes. Objectives were to evaluate the predictive value of several emotional, social, functional, and behavioral factors on four outcomes: death within 90 days, prolonged stay in intensive care, prolonged hospital admission, and readmission within 90 days following cardiac surgery. Methods This prospective study included adults undergoing cardiac surgery 2013–2014, including information on register‐based socioeconomic factors and self‐reported health in a nested subsample. Logistic regression analyses to determine the association and incremental value of each candidate predictor variable were conducted. Multiple regression analyses were used to determine the incremental value of each candidate predictor variable, as well as discrimination and calibration based on the area under the curve (AUC) and Brier score. Results Of 3217 patients, 3% died, 9% had prolonged intensive care stay, 51% had prolonged hospital admission, and 39% were readmitted to hospital. Patients living alone (odds ratio, 1.19; 95% confidence interval, 1.02–1.38), with lower educational levels (1.27; 1.04–1.54) and low health‐related quality of life (1.43; 1.02–2.01) had prolonged hospital admission. Analyses revealed living alone as predictive of prolonged intensive care unit (ICU) stay (Brier, 0.08; AUC, 0.68), death (0.03; 0.71), and prolonged hospital admission (0.24; 0.62). Conclusion Living alone was found to supplement EuroSCORE in predicting death, prolonged hospital admission, and prolonged ICU stay following cardiac surgery. Low educational level and impaired health‐related quality of life were, furthermore, predictive of prolonged hospital admission.

Previous studies have clarified that many patients with Philadelphia-negative myeloproliferative neoplasms (MPNs) have burdensome symptom profiles and accordingly impaired functioning and quality of life (QoL). In Denmark, all MPN patients are affiliated with public hospitals and because of a healthcare system financed by taxpayers these patients do not have any financial costs related to the hematological disease. Diagnoses are recorded for all patients in hospitals, and diagnosis codes are communicated to the National Patient Register (NPR). Owing to this, it was possible to contribute to the elucidation of Philadelphia-negative MPN patients’ health-related quality of life (HRQoL), by conducting a nationwide, population-based, cross-sectional HRQoL survey of these patients with cost-free access to the best available, suitable medical treatment. The survey contained validated questionnaires covering functioning, symptom burden, symptom profile, QoL, and additional questions on lifestyle. Information on comorbid diagnoses was obtained from the NPR. The participants’ HRQoL was compared to the general population. Moreover, differences in HRQoL across essential thrombocythemia, polycythemia vera, myelofibrosis, and unclassifiable MPN participants were investigated, adjusted for age, sex, comorbidity, and lifestyle. To the best of our knowledge this is the first survey of HRQoL in patients with unclassifiable MPN. A total of 2228 Philadelphia-negative MPN patients participated. The participants reported their HRQoL to be inferior to the general population, but the difference was minor. The differences in HRQoL across groups of participants with different MPN subtypes were subtle. Fatigue and sexual problems were prevalent and burdensome. Overall, participants reported a slightly healthier lifestyle compared to the general population.