Anne Grete Frøstrup

Importance: Alopecia areata (AA) carries a psychological burden for patients beyond hair loss. However, quality‐of‐life measurement tools such as EQ‐5D used in clinical trials may not adequately capture the burden of AA, the perceived stigmatization or the psychosocial impact of AA.Objective: To investigate the potential association between disease severity and the degree of social isolation, perceived stigmatization, anxiety and depression, alcohol consumption and work absenteeism using multiple PRO measures in patients with AA.Design, Setting and Participants: Using the Danish Skin Cohort, the study included adult patients diagnosed with AA. The study included multiple PRO measures, including Skindex‐16, EQ‐5D‐5L, Work Productivity and Activity Impairment (WPAI), Alcohol Use Disorders Identification Test‐Consumption (AUDIT‐C) and the Alopecia Areata Symptom Impact Scale (AASIS). The questionnaires were dispatched to the patients in January 2023. The severity of AA was determined based on scalp involvement using a modified Alopecia Areata Scale. Multiple multivariate linear regressions were conducted using Skindex‐16, AASIS and WPAI, while multivariate logistic regressions were applied to HADS, AUDIT‐C and EQ‐5D‐5L.Results: A total of 376 patients were included, of which 177 (47%) had severe disease, 41 (11%) had moderate disease, 94 (25%) had mild disease, and 64 (17%) were in remission. The median age of patients was 55 (IQR, 47–66 years) and most were female (70%). Skindex‐16 and AASIS were the only PRO measures able to distinguish between severity. For these scores, moderate and severe diseases, female sex, and involvement of eyebrows increased the score and negatively impacted patient quality of life.Conclusion and Relevance: The results indicate the importance of using the proper tool for the intended measurement of quality of life and that factors such as the severity of AA, as well as female sex and involvement of the eyebrows, may potentially increase the psychosocial burden of AA.

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 Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn.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 Medical Affairs (MA) function in pharmaceutical companies creates a unique opportunity to ensure the internal linkage between Research & Development (R&D) and Commercial/Marketing functions, in addition to managing external scientific engagements with multiple stakeholders across life-science ecosystems. In recognition of the strategic value of MA, the objective of this paper is to share a comprehensive set of practical examples of the main deliverables within the MA function in the affiliate and align these with the two distinct phases; pre- and post-launch, respectively. We believe that an information gap currently exists in the available literature on these matters addressing practical aspects and examples beyond visionary, strategic thinking. Based on this contribution, further opportunities within MA can be discussed. In addition, we share our thoughts and considerations on future advancements in the role.

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.