Zusammenfassung Hintergrund Die chronisch‐entzündliche Hauterkrankung Hidradenitis suppurativa (HS) führt bei Betroffenen zu ausgeprägten Schmerzen und verminderter Lebensqualität. Trotzdem vergehen oft mehrere Jahre bis zur korrekten Diagnosestellung. In dieser Analyse sollten krankheitsbedingte Erfahrungen und Wege der Patienten mit HS untersucht und der ärztlichen Sicht gegenübergestellt werden. Patienten und Methodik Für die Studie wurden Ergebnisse einer Befragung von Dermatologen und deren Patienten zur Versorgungsrealität bei HS in Deutschland sowie öffentliche Beiträge auf Internet‐Foren und in sozialen Medien analysiert. Zusätzlich wurden Abrechnungsdaten deutscher Krankenkassen ausgewertet. Ergebnisse Patienten mit HS haben eine um 43,3% reduzierte Arbeitsfähigkeit. Die Dermatologie (26,5%) war der am häufigsten konsultierte Fachbereich, die Diagnose HS wurde dabei überwiegend im stationären Bereich (43,8%) gestellt. Als häufigste alternative Diagnose bei HS‐Patienten wurden Abszesse angegeben (53,2%). Die Analyse von Wechseln zu anderen Behandlern ergab, dass diese in der Dermatologie (34,1%) und der Chirurgie (42,4%) vorwiegend innerhalb des Fachbereiches erfolgen. Überweisungen erhielt die Dermatologie mehrheitlich aus dem hausärztlichen Bereich (67,1%) allerdings nur 12,1% von Chirurgen. Schlussfolgerungen Die Diagnoseverzögerung und die dadurch verlängerte Krankheitsbelastung von Patienten mit HS muss dringend reduziert werden. Dazu sollte, möglichst schon als Teil des Medizinstudiums, ein über die Dermatologie hinaus reichendes Bewusstsein für die Erkrankung, ihre Erkennung und Behandlung gefördert werden.
Background: With a rising number of multiple sclerosis (MS) cases and increasing pressure on health systems, digital companion apps like Brisa, designed specifically for people with MS, can play an important role in the patient journey. These apps enable the collection of real-time longitudinal data that are critical to our understanding of the pathophysiology and progression of MS. Methods: This retrospective, descriptive analysis consists of data from Brisa users who registered between 6 August 2021 and 8 September 2022. Of the unique users, 37.7% (n = 1593) fulfilled the inclusion criteria including information about medication and demographics and tracked one or more symptoms and/or patient-reported outcomes. Users were classified as moderate-efficacy treatment users, high-efficacy treatment users and ocrelizumab users, and the reporting frequency and scores of symptoms and patient-reported outcomes were analyzed. Results: The largest cohort of Brisa users (405) reported treatment with ocrelizumab and were mostly diagnosed 2–5 years before the survey. The most reported MS symptoms were similar between OUs (ocrelizumab users), HETUs (high-efficacy treatment users) and METUs (moderate-efficacy treatment users). OUs on average reported symptoms and answered questionnaires more frequently. Baseline scores between HETUs and OUs were similar, whereas baseline scores of METUs were slightly lower in comparison. In a further analysis of OUs, disability scores increased with age; users aged 26–45 years had higher pain scores than 18–25-year-olds. No significant differences were found in quality of life, bowel control and vision between age groups. Conclusion: These findings show that the characteristics of the Brisa cohort are similar to the results of other studies and registries and can provide a representative overview of everyday disease management. Thereby, these results can bridge the gap between clinical research and real patient experience, but they also raise new questions, such as how often the hard-and-early therapy approach is already used and whether baseline characteristics and reasons for choosing a particular treatment contribute to the different outcomes over time. Answering these questions requires further research and analysis.
BackgroundThe chronic inflammatory skin disease hidradenitis suppurativa (HS) leads to severe pain and reduced quality of life. Nonetheless, it often takes years until a correct diagnosis is made. In this analysis, disease-related experiences and pathways of patients with HS were investigated and compared with the physicians' perspective.MethodsPublic posts on forums and social media as well as results of a survey conducted among dermatologists and their patients on the actual medical care reality of HS in Germany were analysed. Furthermore, claims data from German health insurance companies were evaluated.ResultsPatients with HS suffer from a 43.3% reduction in working ability. Dermatology (26.5%) was the most frequently consulted specialty, with HS diagnosed predominantly in the inpatient setting (43.8%). Abscesses were described as the most frequent alternative diagnosis in HS patients (53.2%). Patient-reported changes of physicians in dermatology (34.1%) and surgery (42.4%) occurred predominantly within the specialty. Dermatology received most referrals from general practitioners (67.1%), but only 12.1% from surgeons.ConclusionThere is an urgent need to reduce the delay in diagnosis and the prolonged burden of disease in patients with HS. Therefore, awareness of the disease, its detection and treatment which goes beyond dermatology should be promoted, if possible as part of medical studies.
Background: While evidence highlights the effectiveness of initiating disease-modifying therapy with a high-efficacy medication for multiple sclerosis (MS) patients with poor prognostic factors, it remains unclear whether this approach has been adopted by a broad range of MS providers in Germany yet. Objective: To assess the adoption of the early highly effective treatment (EHT) compared to the treat-to-target treatment approach with the option of escalating treatment efficacy over time in Germany based on real-world evidence data. Design: Patient-level pharmacy dispensing data from the Permea platform were analysed from 2020 to 2022. Methods: In total, 29,529 therapy beginners (>18 years) were included to analyse shifts in treatment approaches over time and switching behaviour. Medication classification adhered to the German Society of Neurology guidelines and designated fumarates, glatiramer acetate, teriflunomide and interferons as low-efficacy category 1 medications; cladribine and S1P-modulators as medium-efficacy category 2 medications; and alemtuzumab, natalizumab, ocrelizumab, ofatumumab and rituximab (off-label) as high-efficacy category 3 medications. Results: Our results show that 70.0% of patients redeemed their first prescription for category 1 medication, 16.3% for category 2 and 13.7% for category 3 medications. The proportion of prescriptions filled shifted from 2020 to 2022 with a decrease of 14.7% for category 1 drugs and an increase of 12.5% for category 3 drugs. 93.2% of patients stayed on their initially prescribed medication category. 3.2% of category 1 and 3.7% of category 2 therapy beginners escalated to category 3 medication. 3.4% of category 3 medication users de-escalated their treatment to category 1 or category 2. Conclusion: While most individuals started their treatment according to the treat-to-target approach and remained on their initially prescribed medication category, there has been a steadily increasing shift towards the EHT approach since 2020. These insights demonstrate that, while not officially recommended by German guidelines, MS providers increasingly adopt the EHT approach.
Background Multiple Sclerosis (MS) is a chronic and progressive neurological autoimmune disease currently affecting 250,000 individuals in Germany. Patients suffering from the disease can be severely impaired in their day-to-day activities. BRISA is a digital app specifically designed to help MS patients monitor their disease by regularly tracking symptoms. Lengthy and time-consuming questionnaires for patient-reported outcomes (PRO) are the standard method to assess the patients’ current condition. Here, we examine whether simplified versions of these questionnaires can provide comparable information regarding individual symptom presentations in BRISA users. Methods 828 users were included in the analysis. Patients who provided onboarding information and answered at least one questionnaire and the corresponding simplified smiley symptoms assessment were included. Correlation of questionnaire and symptom scores was calculated using Pearson's correlation. Results Our analysis cohort predominantly consisted of female, 26–55-year-olds. Relapsing-remitting MS (RRMS) was the most common MS type recorded. Most patients were diagnosed 2–5 years ago. Questionnaires regarding fatigue and vision impairment were among the most answered, those regarding bowel movement and sexual satisfaction received fewest responses. Overall, the scores from questionnaires and symptoms correlated positively. Scoring correlation could also be shown across the subgroups divided by gender, age groups, type of MS, and time since diagnosis of the disease. Conclusion Scores recorded from traditional PRO questionnaires can be reflected more easily as a trend in a simplified scale using smileys. Nevertheless, traditional questionnaires are needed to also maintain a more objective assessment. In conclusion, the patient will benefit most from an adaptive combination of regular traditional PRO questionnaire assessments and simplified symptom recording.
Background: Real-word evidence from diverse data sources is increasingly important in terms of generating rapid insights to effectively manage patient populations, especially during major public health disruptions such as the ongoing COVID-19 pandemic. Patients with chronic and inflammatory diseases -such as multiple sclerosis (MS) -were reported to experience potentially negative effects due to the use of immunosuppressive drugs in combi-nation with a COVID-19 infection. In this research, we explored the impact of the COVID-19 pandemic on medication use in patients with MS in Germany.Methods: Patient-level pharmacy dispensing data from the Permea platform -covering approximately 44% of all community pharmacy dispensing in Germany -were analysed from 2019 -2021. Longitudinal use patterns of MS medication and antidepressants and patient demographics were assessed. Daily variation in MS medication use was specifically studied around the dates of the first and second lockdowns in Germany.Results: We included data from 539,400 prescriptions which included at least 1 MS drug. The medication data showed a stable level of monthly prescriptions for MS medication at 2.02 +/- 0.03 prescriptions per pharmacy during the study period. Although there was a sharp increase in daily prescriptions before the first lockdown (from an average 660.08 +/- 137.59 daily prescriptions in the observed period to a maximum dispensing number of 998 daily prescriptions), the overall number of prescriptions remained at pre-pandemic levels (603 +/- 90.31 daily prescriptions in 2019). Similar trends were observed for monthly co-prescribed antidepressant use per pharmacy (0.10 +/- 0.01 in 2019-0.11 +/- 0.02 in 2020).Conclusion: Throughout the COVID-19 pandemic, the use of MS medications and co-prescribed antidepressants was stable. These insights from real-world data demonstrate the value of evidence-based insights for managing patient care.
INTRODUCTION:Real-world evidence (RWE) data is increasingly important to generate rapid insights to effectively manage patient populations. Disruptions like the coronavirus disease 2019 (COVID-19) pandemic may negatively impact the choice of medications used for managing chronic diseases such as psoriasis (PSO). Here, we explored the effect of the COVID-19 pandemic on the sales volumes of treatment guideline-based PSO medication in Germany.METHODS:Patient-level pharmacy dispensing data from the Permea platform, covering approximately 44% of all community pharmacy dispensing in Germany, were analysed from 2019 through to 2021. Patient demographics and PSO indicated medication sales were assessed specifically before and during the pandemic in Germany.RESULTS:We included 6,865,852 sold PSO related drugs from April 2019 to March 2021. Medication sales increased during the pandemic compared with before the pandemic for treatment classes of first-line biological and second-line drugs. The increase was observed across all age groups, but monthly variations could not be detected. Furthermore, we observed increased sales in first-line biological and second-line medications when comparing low to high COVID-19 incidence state.CONCLUSION:Throughout the COVID-19 pandemic the PSO indicated medication sales increased for first-line biological and second-line treatment. This shows that despite the pandemic impact, there continues to be an increase in sales volume for biologics. Only German federal states with intermittently very high COVID-19 incidences show a stagnation in sales volume. The reasons for this need to be investigated in further studies to possibly gain a better understanding of the concerns and uncertainties of patients with PSO.
Background:Axial spondyloarthritis (axSpA) is a chronic inflammatory disease which primarily affects the axial skeleton resulting in chronic back pain and stiffness. According to the guideline, the first-line treatment includes non-steroidal anti-inflammatory drugs (NSAIDs), conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) and non-pharmacological treatment. Second line treatment involves biological disease-modifying antirheumatic drugs (bDMARDs) such as tumour necrosis factor and interleukin-17 inhibitors. Objectives:The aim of this social media listening research project was to analyse switches of medication and the reasons thereof to gain valuable insights into real-life journeys of patients suffering from axSpA. Methods:Publicly available posts in German-speaking disease-specific forums were scanned for disease-specific keywords and commonly used drugs by axSpA patients on the Permea platform. Posts containing at least two key words were selected and switches between medications were manually labelled. A total of 287 scraped posts between 01 July 2010 and 04 Feb 2022 were analysed. Results:The largest group of described medication switches was initially using bDMARDs. Switches to a different bDMARD, termination of medication and switches to glucocorticoids were most frequently named. Patients on NSAIDs switched to glucocorticoids, a different NSAID or bDMARD, whereas patients on csDMARDs most frequently changed to bDMARDs. In all medication groups the main reason for switching was insufficient efficacy and side effects. Additionally, for the medication groups bDMARDs, csDMARDs and corticosteroids, pregnancy and lactation were given as a reason for switching, whereas patients in the NSAID group never mentioned pregnancy and breastfeeding as a reason for switching treatment. Conclusion:Our analysis shows medication switches based on real-life patient experiences shared with peers in a social listening setting. We also show medication switches differing from advised guidelines. Gathering real-life insights into patients' journey dealing with chronic diseases allows us to understand, and thereby improve patient care and treatment.
Rapid urbanization has led to an exponential increase in lifestyle-associated metabolic disorders presenting a huge socioeconomic burden. Waya is a digital prevention program that guides overweight and obese individuals to maintain a healthy lifestyle through exercise, diet, and educational videos. Objectives and aims:We aimed to study the demographic patterns of the Waya cohort and examine the prevalence of diabetes (the most common lifestyle-associated metabolic disorder) and its risk factors in comparison to the GEDA 2014/2015-European Health Interview Survey population. Methods:Waya participants who registered by 1 October 2020 and who answered at least one health survey question were included in this study. Factors such as obesity, hypertension, and diabetes between the two populations were compared using Chi-square test. Results:Of the 837 participants, 86.1% were women. The proportion of obese participants was higher in Waya than in the German Health Update (GEDA) cohort (women: 39.4% vs. 18%, P < 0.05; men: 37.1% vs. 18.3%, P < 0.05), whereas the proportion of participants with hypertension (women: 12.1% vs. 30.9% in GEDA, P < 0.05; men: 22.4% vs. 32.8% in GEDA, P < 0.05) was lower. The proportion of women with diabetes was low in our cohort (3.9% vs. 7% in GEDA, P < 0.05); however, the proportion of men with diabetes remained the same between the two groups. We observed significant differences between the GEDA and Waya cohorts due to changes in the prevalence pattern over time or target bias of the digital program. Conclusion:These findings showcase the usability of Waya in collecting real-world insights, which will be beneficial in monitoring the prevalence of chronic metabolic disorders and associated risk factors over time.
Background: Multiple sclerosis (MS) is a chronic, progressive neurological autoimmune disease impacting quality of life. BRISA is an app designed to help MS patients in Germany track their disease course by symptom-monitoring. This study aimed to understand demographic and health-related characteristics of BRISA users. Methods: Demographic data provided by 2095 users were analyzed to describe characteristics such as sex, age, type of MS, and medication. The distribution of tracked symptoms based on age and time since diagnosis were studied. Furthermore, the covariance of specific symptom pairs was analyzed. Results: BRISA users are predominantly female and between 26 and 55 years old. Relapsing–remitting MS was the most prevalent form of MS. First-line category 1 drugs were most frequently used, followed by high-efficacy category 3 drugs (e.g., monoclonal antibodies). The relative frequencies of use of category 1 and category 2 drugs (e.g., spingosine-1-phosphate-receptor modulators) significantly altered with time since diagnosis. Fatigue, concentration disorders, tingling, forgetfulness, and pain were the top five symptoms affecting users. Conclusion: The results highlight the diversity among MS patients and the need for extensive cohort characterization in the real-world scenario. In-depth analysis could help in identifying novel insights that could aid in disease management.
Background The increasing prevalence of lifestyle-driven metabolic disorders poses a heavy burden on the healthcare system. Several low-cost, easily accessible, and effective weight loss interventions are being developed to improve this situation. Waya is one such German digital application that guides users to reach their desired weight in a healthy manner, by monitoring their eating habits and physical activity levels. In this retrospective real-world observational pilot study, we aimed to identify if the use of Waya helps in reducing weight as intended and the underlying factors associated with it. Methods Data from healthy overweight or obese participants who provided their weight information and answered the short form of the Weight Efficacy Lifestyle Questionnaire and the International Physical Activity Questionnaire activity questionnaires once before the completion of the first module (baseline) were compared with data provided after the beginning of the last module. Age and sex-based distribution were studied and the correlation between nutrition, physical activity, and weight was analyzed. Results Waya participants showed an improvement in nutritional behavior, physical activity levels, and weight reduction compared with baseline. These changes were independent of age and sex. Weight loss mainly correlated with improvements in nutritional behavior but not physical activity. Conclusion The results from our pilot study showed that Waya is beneficial in bringing about short-term weight loss mainly through behavioral changes in nutrition. Although physical activity levels improved, its influence on weight loss was not apparent.