Peter Bo Poulsen

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.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Atopic Dermatitis (AD) is a widespread disease that affects up to 20% of the population in affluent countries. The disease and its impact have been studied on many surveys performed either through mail or telephone or on site in hospitals. These methods are however often laborious and costly. To investigate if outreach through social media can be used to recruit AD patients and if the data obtained are robust, clinically relevant and reflects what has been found in surveys so far. Patients with AD were invited to answer an online questionnaire on disease severity, treatment, and effect on daily quality of life. The participants were invited through the Facebook site of the Danish Atopic Dermatitis Patients Organization. We found that when using Facebook for outreach there were significantly more female respondents than would be expected, the average age was lower than the average age in Denmark, and significantly more respondents than expected had an educational level of at least bachelor’s degree. Disease severity was skewed towards more severe AD than would be expected from general population studies, however the patients were also recruited through a patient organization. The use of proactive versus reactive treatment was also investigated, and patients with severe AD has longer use of reactive treatment and were more prone to use proactive treatment. In this study we show that social media (Facebook) can be used for outreach to recruit AD respondents for surveys. Our results also show that data maybe are skewed towards females, young age, and high educated, which are those who use the social media for information finding of health-related issues. On the other, the survey was cheap and the results did reflect what we already know from other surveys and that clinical useful data can be obtained.

The recommended first-line treatment for advanced, ER+/HER2 negative breast cancer is a CDK 4/6 inhibitor in combination with an endocrine backbone. This study investigated the use of palbociclib, ...

Background: Historically, Denmark has had poor survival for cancer patients relative to other western countries with comparable health-care systems. In this study, we examine the long-term cancer impact of a nationwide reform addressing all cancer diagnostics, implemented in 2006. The analyses include patients diagnosed with breast cancer and their spouses (informal caregivers). Patients and their spouses diagnosed before and after the reform were compared. Focus is on the potential impact on overall survival, early retirement, sick leave, unemployment as well as earnings (income). Methods: In a nationwide retrospective cohort study utilizing the Danish National Patient Register we identified 77,474 breast cancer patients between 1st January 2002 and 31st December 2018. Data was merged with the National Cancer Register, the Central Person Register, the Education Register, the DREAM Register and the Income Register using citizens’ personal identification number. Spouses of cancer patients were identified through the Central Person Register. Propensity score matching was applied to match populations before and after the reform. Analyses on matched as well as unmatched populations were performed. Results: In a matched sample, risk of mortality was reduced by 15% for breast cancer patients diagnosed after the reform. Moreover, there was a 15% reduced risk of early retirement. The patients diagnosed after the reform had reduced income three to five years after diagnosis relative to those diagnosed before the reform, likely due to survival bias and labor market conditions. In an unmatched sample of patients diagnosed two years before or after the reform, mortality was reduced by 7%. Conclusion: Implementation of the nationwide cancer reform together with advancement in new cancer treatments had a positive impact on survival and reduced risk of early retirement. The results from this study are reassuring that relevant health-care reforms improve cancer outcome.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Atopic Dermatitis (AD) is a widespread disease that affects up to 20% of the population in affluent countries. The disease and its impact have been studied on many surveys performed either through mail or telephone or on site in hospitals. These methods are however often laborious and costly. Objective: To investigate if outreach through social media can be used to recruit AD patients and if the data obtained are robust, clinically relevant and reflects what has been found in surveys so far. Methods: Patients with AD were invited to answer an online questionnaire on disease severity, treatment, and effect on daily quality of life. The participants were invited through the Facebook site of the Danish Atopic Dermatitis Patients Organization. Results: We found that when using Facebook for outreach there were significantly more female respondents than would be expected, the average age was lower than the average age in Denmark, and significantly more respondents than expected had an educational level of at least bachelor’s degree. Disease severity was skewed towards more severe AD than would be expected from general population studies, however the patients were also recruited through a patient organization. The use of proactive versus reactive treatment was also investigated, and patients with severe AD has longer use of reactive treatment and were more prone to use proactive treatment. Conclusions: In this study we show that social media (Facebook) can be used for outreach to recruit AD respondents for surveys. Our results also show that data maybe are skewed towards females, young age, and high educated, which are those who use the social media for information finding of health-related issues. On the other, the survey was cheap and the results did reflect what we already know from other surveys and that clinical useful data can be obtained.

A new 20-valent pneumococcal conjugate vaccine (PCV20) provides protection against 20 pneumococcal serotypes. The vaccine has the potential to decrease the impact of pneumococcal diseases in societ...

Current evidence base for atrial fibrillation (AF) screening is insufficient. An important finding in the STROKESTOP study was that non-participants had significantly worse outcomes. In a group of potentially non-participants feasibility of opportunistic screening in a domiciliary setting with municipality preventive home visits to citizens ≥75 years was investigated. Handheld ECG device was used by trained municipality caregivers followed by cardiologist assessment. Eighty-five percent consented to being screened, and seven of 477 screened were found with AF. Opportunistic screening in preventive home visits had a high participation rate and was feasible. Randomized trials are needed before making any firm conclusions.

BackgroundHistorically, Denmark has had poor survival for cancer patients relative to other western countries with comparable healthcare systems. The associated adverse outcomes may have been attributed to lifestyle factors or healthcare system weaknesses. In this study, we examine the long-term cancer impact of a nationwide reform addressing all cancer diagnostics, implemented in 2006. Our analyses include patients diagnosed with breast cancer and their spouses (informal caregivers). Patients and their spouses diagnosed before and after the reform was compared. Focus is on the potential impact on overall survival, early retirement, sick leave, unemployment as well as earnings (income).MethodsIn a nationwide retrospective cohort study of real-world data utilizing the Danish National Patient Register we identified 77,474 breast cancer patients between 1^st January 2002 and 31^st December 2018. Data was merged with the National Cancer Register, the Central Person Register, the Education Register, the DREAM Register and the Income Register using citizens’ personal identification number. Spouses of patients were identified through the Central Person Register. Propensity score matching was applied to match populations before and after the reform. Analyses on matched and unmatched populations were performed.ResultsIn a matched sample of cases diagnosed before and after the reform, we found a 15% reduction in risk of mortality for breast cancer patients after the reform. Moreover, there was a 15% reduced risk of early retirement. The patients diagnosed after the reform had reduced income three to five years after diagnosis relative to those diagnosed before the reform, likely due to survival bias and labour market conditions, such as the financial crisis (2008– 2009). In an unmatched sample of patients diagnosed two years before or after the reform, we found a 7% reduction in mortality.ConclusionImplementation of the nationwide cancer reform together with advancement in new cancer treatments had a positive impact on the survival of breast cancer patients. The patients diagnosed after the reform also had reduced risk of early retirement, indicating reduced burden of disease relative to those diagnosed before the reform. The results from our study are reassuring that relevant healthcare reforms improve cancer outcome.

Only few existing studies have investigated the mortality from cardiovascular disease (CVD) in women with breast cancer (BC). The aim of this study was to investigate CVD mortality in patients with...