Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology.

BACKGROUND: Real-world evidence (RWE) is a valuable instrument to better understand the patient journey and effectiveness of therapies. RWE on the prevalence of uncontrolled chronic rhinosinusitis (CRS) and CRS natural course of disease across Europe is scarce. In addition, there is limited RWE that enables comparison of the effectiveness of marketed therapies including topical or systemic corticosteroids, sinus surgery, or biologics. OBJECTIVE: To establish an international CHRonic rhINOSinusitis Outcome Registry (CHRINOSOR) based on real-world data collection enabled by mobile health technology. METHODOLOGY: A digital platform, Galenus Health, supporting patients and physicians in the management of chronic respiratory diseases, is used to collect data on patient profile, disease history, patient outcomes, and a set of relevant clinical outcomes. Adult patients with a diagnosis of CRS are eligible for inclusion. RESULTS: A collaborative scientific network of 17 university ear-nose-throat (ENT) clinics from 10 European countries has been established with the aim to collect real-world data in a longitudinal and standardized manner. The Galenus Health digital platform is currently being implemented in these ENT clinics taking into account legal, privacy, and data security aspects. Up to 300 patients have already been included. CONCLUSIONS: CHRINOSOR is a collaborative effort that aims at improving our understanding of CRS, its comorbidities, and the effectiveness of its treatments. Ultimately, these insights will guide us as scientific community to develop future care pathways informed by RWE.

Allergic respiratory disease care in the COVID-19 era: A EUFOREA statement.

Spring and Summer 2020 are unique in that the challenges of care for those suffering from pollen allergy coincide with the COVID-19 pandemic. Several considerations are important to allow optimal care of allergic rhinitis (AR) and asthma and hence prevention of coronavirus spread through sneezing, rhinorrhoea, and coughing. This compact overview of recommendations by the EUFOREA expert teams on allergic airway diseases and allergen-specific immunotherapy (AIT) is based on investigation of the current COVID-19 literature in association with the key words above and shared clinical experience of the experts involved. It deals with similarities and differences between AR and coronavirus infection, specific recommendations for allergic disease care in the COVID-19 era, including guidance on AIT.

Real-life assessment of chronic rhinosinusitis patients using mobile technology: The mySinusitisCoach project by EUFOREA.

BACKGROUND: Chronic rhinosinusitis (CRS) is a chronic inflammatory disease associated with a substantial personal and socioeconomic burden. Monitoring of patient-reported outcomes by mobile technology offers the possibility to better understand real-life burden of CRS. METHODS: This study reports on the cross-sectional evaluation of data of 626 users of mySinusitisCoach (mSC), a mobile application for CRS patients. Patient characteristics of mSC users were analysed as well as the level of disease control based on VAS global rhinosinusitis symptom score and adapted EPOS criteria. RESULTS: The mSC cohort represents a heterogeneous group of CRS patients with a diverse pattern of major symptoms. Approximately half of patients reported nasal polyps. 47.3% of all CRS patients were uncontrolled based on evaluation of VAS global rhinosinusitis symptom score compared to 40.9% based on adapted EPOS criteria. The impact of CRS on sleep quality and daily life activities was significantly higher in uncontrolled versus well-controlled patients. Half of patients had a history of FESS (functional endoscopic sinus surgery) and reported lower symptom severity compared to patients without a history of FESS, except for patients with a history of more than 3 procedures. Patients with a history of FESS reported higher VAS levels for impaired smell. CONCLUSION: Real-life data confirm the high disease burden in uncontrolled CRS patients, clearly impacting quality of life. Sinus surgery improves patient-reported outcomes, but not in patients with a history of more than 3 procedures. Mobile technology opens a new era of real-life monitoring, supporting the evolution of care towards precision medicine.

Bother problems in prostate cancer patients after curative treatment.

BACKGROUND: Most previous studies of prostate cancer (CaP) patients have focused on functional side effects. In the decision about treatment, the patients' subjective experience of function (bother) should also be considered. In this prospective study of CaP patients, we used both categorical and dimensional methods to examine changes of sexual, urinary, and bowel bother after robot-assisted prostatectomy (RALP), after high dose radiotherapy alone (RAD), or with adjuvant androgen deprivation therapy (RAD + ADT). We also studied the associations between psychosocial factors and post-treatment bother and the correlations between bother and function at the follow-up time points. METHODS: A total of 462 patients (n = 150 RALP, n = 104 RAD, and n = 208 RAD + ADT) completed questionnaires at all time points (baseline, 3, 6, 12, and 24 months post-treatment). Our outcome measures were the proportion of patients who regained their baseline bother core (PBS-100) and the mean group scores on sexual, urinary, and bowel bother based on the UCLA-PCI questionnaire. Generalized estimating equation (GEE) identified the time points at which various variables were significantly associated with bother at 2 years. The time points at which the proportions of bothered patients became stable were defined. RESULTS: The different treatment modalities provided distinctive patterns over time regarding urinary, sexual, and bowel bothers. RALP gave sexual and urinary bother, RAD + ADT patients reported bowel and sexual bother, while RAD patient suffered mainly from bowel bother. According to GEE, the bother scores at 3 or 6 months were significantly associated with the bother scores at 24 months for all groups. PBS-100 and stability of the recovered bother domains was reached at 3 to 6 months. Strong correlations were observed between function and bother for the urinary and bowel domains but not for the sexual domain. The associations between psychosocial factors and bother were weak. CONCLUSIONS: Two years after treatment, RALP patients mainly reported sexual and urinary bother, while irradiated patients were bothered by bowel dysfunction. Sexual, urinary, and bowel bother reached stable proportions at 3 to 6 months post-treatment. Based on GEE, bother at 6 months was in general significantly associated with bother at 24 months.