Burden of Disease of Duchenne Muscular Dystrophy in Denmark - A National Register-Based Study of Individuals with Duchenne Muscular Dystrophy and their Closest Relatives.

Background: Duchenne Muscular Dystrophy (DMD) is a progressive genetic disease with a prevalence of 1 per 3,600-6,000 male births. Individuals with DMD are typically diagnosed at age 4-7 years; median survival is 30 years. They require multidisciplinary care, personal assistance, and often special education. Objective: The aim was to assess the burden of disease in DMD in Denmark. This includes incidence, prevalence, use of healthcare services, labour market participation, educational outcomes, and overall attributable costs due to DMD. Impact on the closest relatives (siblings and parents) was also investigated. Methods: The comprehensive Danish national health and administrative registers were used to assess the burden of disease following individuals with DMD and closest relatives from five years before, and up to 20 years after DMD diagnosis. Individuals with DMD (and relatives) from 1994-2021 were included. All outcomes were compared to matched control groups without the disease drawn from the Danish population. Results: 213 unique individuals with DMD were identified. They had lower grades in school, required more special education and more healthcare and home care compared to their control group. The extra costs of special education summed to EUR 180,900 over the course of 11 years elementary school. They had an annual average productivity loss of EUR 20,200 between the age of 18 to 30. The extra healthcare costs of DMD in the 20 years after diagnosis were estimated to EUR 1,524,000. If an individual with DMD lives to be 30, total extra costs sum to EUR 2,365,800. Conclusions: Using national register data this study presented detailed results on the burden of disease of DMD, including impact on closest relatives. With 60 additional hospital admissions and 200 extra outpatient contacts in 20 years healthcare costs, but also costs of home care and special education, increases as disease progresses.

Cancer-related neuropathic pain in out-patient oncology clinics: a European survey.

BACKGROUND: Although pain is frequently experienced by patients with cancer, it remains under-treated. The primary aim of this study was to estimate the prevalence of cancer-related neuropathic pain (CRNP) in patients with chronic pain who attended an outpatient clinic for standard care in Europe (irrespective of the reason or stage of the cancer). The secondary aims of this study were to characterise pain and cancer in patients with CRNP (including treatment) and to evaluate the usefulness of the painDETECT (PD-Q) screening tool to help physicians identify a potential neuropathic component of cancer-related pain. METHODS: An observational, non-interventional, cross-sectional, multi-centre study of adult patients with cancer using patient and physician case report forms (CRFs). Patients with CRNP were identified by physicians' clinical assessments after examining the completed PD-Q. RESULTS: A total of 951 patients visiting outpatient clinics across Europe were enrolled in this study between August 2010 and July 2011. Of these, 310 patients (32.60%; 95% confidence interval 29.62, 35.58) were identified as having CRNP. Twenty-nine of 39 (74.4%) physicians who completed the CRF relating to the PD-Q considered it a useful tool to help detect CRNP in daily practice and 28 of 39 (71.8%) indicated that they would use this tool in the future for most or some of their patients. Data from physicians before and after review of the completed PD-Qs showed a shift in clinical opinion (either to positive CRNP diagnosis [yes] or negative CRNP diagnosis [no]) in respect of 142 patients; about half of which (74) were categorised with an initial diagnosis of unknown. Opinions also shifted from a no to a yes diagnosis in 10 patients and from a yes to a no diagnosis in 51 patients. CONCLUSIONS: Approximately one-third of adults with cancer experiencing chronic pain attending outpatient clinics as part of routine care were considered to have CRNP in the opinion of the physicians after considering scores on the PD-Q. While physicians did not consider the PD-Q to be a useful tool for all patients, shifts in diagnosis before and after the use of this tool indicate that it may help physicians identify CRNP, especially where there is initial uncertainty.

Association Between Metabolic Syndrome and Radiographic Hand Osteoarthritis: Data From a Community-Based Longitudinal Cohort Study.

OBJECTIVE: To explore whether metabolic syndrome and its components are associated with hand osteoarthritis (OA) using longitudinal data from the Framingham Study. METHODS: Our cross-sectional analyses included 1,089 persons (ages 50-75 years), of whom 785 had longitudinal radiographs obtained 7 years apart. Of these, 586 with no hand OA at baseline were included in analyses of hand OA incidence. We explored associations between metabolic syndrome and its components (central obesity, hypertension, diabetes mellitus, triglyceridemia, and low high-density lipoprotein) and radiographic hand OA (defined as ≥2 interphalangeal joints with a Kellgren/Lawrence [K/L] grade of ≥2) using logistic regression analyses with adjustment for age, sex, and body mass index. In longitudinal analyses, metabolic syndrome was used as a predictor for change in K/L sum score and incident hand OA. RESULTS: Metabolic syndrome was not associated with the presence of hand OA (odds ratio [OR] 1.11 [95% confidence interval (95% CI) 0.78-1.59]), change in K/L sum score (OR 0.83 [95% CI 0.59-1.17]), or incidence of hand OA (OR 0.91 [95% CI 0.58-1.44]). Hypertension was borderline significantly associated with the presence of hand OA (OR 1.25 [95% CI 0.90-1.74]), and a significant association was found between hypertension and change in K/L sum score (OR 1.47 [95% CI 1.08-1.99]). Consistent dose-response relationships were not demonstrated (data not shown). Furthermore, hypertension was not significantly associated with hand OA incidence (OR 1.23 [95% CI 0.82-1.83]). No significant associations were found between metabolic syndrome and erosive hand OA. CONCLUSION: We found no association between metabolic syndrome and hand OA. The role of hypertension in hand OA pathogenesis warrants further investigation.

Real-life efficacy of pregabalin for the treatment of peripheral neuropathic pain in daily clinical practice in Denmark: the NEP-TUNE study.

OBJECTIVE: The aim of this study was to provide evidence regarding the real-life efficacy of pregabalin in the treatment of peripheral neuropathic pain (NeP) in Denmark. METHODS: In this prospective, observational, noninterventional study, pregabalin (Lyrica(®)) was prescribed following usual clinical practice. Compared with baseline, the primary study end points after 3 months of observation were changes in 1) the average level of pain during the past week, 2) the worst level of pain during the past week, and 3) the least level of pain during the past week. The Wilcoxon signed-rank test was used to perform paired analyses, and a multivariate regression analysis investigated factors driving change in pain. RESULTS: A total of 86 of the 128 patients included were regarded as efficacy evaluable (those completing 3 months of pregabalin treatment). Patients (59 years) were long-time sufferers of peripheral NeP, and 38% of them had comorbidities. The majority had previously been treated with tricyclic antidepressants or gabapentin. The average dose of pregabalin was 81.5 mg/d at baseline and 240 mg/d after 3 months. A clinically and statistically significant improvement of 2.2 points in the average level of pain intensity was found after 3 months. The higher the pain intensity at baseline, the higher was the reduction of the pain score. Positive results were also found for pain-related sleep interference, patients' global impression of change, quality of life, and work and productivity impairment. Twenty-one patients reported 28 adverse events. CONCLUSION: This real-life study indicates that for some patients (two-thirds), addition of pregabalin for peripheral NeP helps to reduce their pain intensity significantly.

Real-life effectiveness of smoking-cessation treatments in general practice clinics in Denmark. The Escape Smoke project.

BACKGROUND: The smoking prevalence has not decreased in the last years in Denmark. General practice (GP) offers smoking cessation (SC) treatment. Studies of real-life effectiveness of daily practice SC-activities from the GP-setting opposed to efficacy results from randomized clinical trials are few. The study aim was to evaluate the real-life effectiveness of SC-treatments for daily smokers among Danish GP-clinics. METHODS: In a multi-centre-based observational study design Danish GP-clinics with prior SC-activity recruited daily smokers motivated for quitting. As per usual clinical practice SC-medicine could be nicotine replacement therapy (NRT), prescription-based SC-medicine (varenicline or bupropion) or no medicine. The primary endpoint was percentage of patients remaining abstinent 6 months after the quit date (ITT, self-reported continuous abstinence). RESULTS: Forty GP-clinics recruited 515 (273 females, 20% COPD) daily smokers being moderately nicotine dependent and heavy smoking (19 cigarettes/day). Receiving intensive advice, 74% did use SC-medicine paid out-of-pocket (1/3 NRT and 2/3 prescription-based). After 6 months, 187 participants had remained abstinent (36%). Adjusted for potential confounding the use of prescription-based SC-medicine plus counseling was associated with significantly doubling the chance of staying abstinent after 6 months as compared to no SC-medicine (OR: 1.97). This association could not be found for NRT. Being male and using prescription-based SC-medicine were independent significant predictors for long-term abstinence. CONCLUSIONS: Smoking cessation in Danish GP-clinics with some prior SC-activity can result in rather high long-term quit rates, especially when combining counseling and prescription-based SC-medicine. The effectiveness of prescription-based SC-medications versus NRT in the general population merits further investigation.

Susceptibility of spotted wolffish Anarhichas minor to experimental infection with nodavirus and infectious pancreatic necrosis virus.

The spotted wolffish Anarhichas minor is a promising new species for cold-water aquaculture. The broad host-range of piscine nodavirus (NV) and infectious pancreatic necrosis virus (IPNV) makes them potentially pathogenic to new fish species in aquaculture. IPNV and NV strains highly pathogenic in farmed Atlantic salmon Salmo salar and halibut Hippoglossus hippoglassus, respectively, in Norway were used for the challenge of spotted wolffish. In general, water-borne infection with IPNV and NV resulted in significant mortality among juveniles <1 g. Cumulative mortality after bath-challenge and cohabitation was 60 to 75% in the smallest juveniles (0.3 g). Intramuscular and intraperitoneal injection of NV was 100% lethal to wolffish of 10 g, and the groups at 12 degrees C died before those at 7 degrees C. No cohabitants of this size died, but NV was still detectable in these individuals after 10 wk. A persistent IPNV infection with low mortality developed in bath-challenged juveniles of 0.7 g, in which IPNV was still detectable 4 mo later. This study comprises a demonstration of experimental viral infections in cultured spotted wolffish, although to date no natural outbreaks of viral diseases have been reported in this species.