Résumé
Background: Due to COVID-19, we saw an increased usage of digital platforms for healthcare delivery. However, its effect on internet postings for CF during 2021 is unknown. Methods: CF key phrases were identified by a CF MDT and entered in Google Alerts and tracked for 6 months in 2021. Alertswere also created for Asthma, COPD and Lung Fibrosis. Data recorded for each alert includes the date, title, URL, category, country of origin;if a discussion, like/share took place. Thiswas then compared against previous data collected (2015, 2019). Results: The number of CF alerts recorded decreased (2021:1846– 2015:2742) while the number of blocked alerts increased (2021:325– 2015:89). Almost half of the CF alerts originated from the USA. In 2021, News was the most common category (33.96%) followed by Financial/ Marketing (25.73%) and Medical (21.07%). The most common category for 2015 was News (58.35%) and Financial/Marketing in 2019 (35.2%). The majority of CF terms experienced an increase in quantity, specifically alerts relating to CF pathogens or changing condition expectations, such as Pseudomonas (2021:718, 2015:149), CFLD(2021:428, 2019:865, 2015:37), and CF Pregnancy (2021:91, 2015:5). For the comparative lung conditions, in 2015 Asthma was the most common alert (985) followed by CF, COPD, and Lung Fibrosis. In 2019 CF (605) was the most common. In 2021, the quantity of alerts decreased for all conditions, with CF (316) and Asthma (336) being of similar magnitude. Conclusion: The landscape for CF internet postings continues to evolve. CF is discussed frequently online, with the focus of these discussions changing to news items in 2021. The increased frequency of specific CF terms may reflect changing expectations (e.g Pregnancy). The number of blocked alerts continues to increase, potentially reflecting different global GDPR practices. Online non-EU healthcare resources need to factor this into their practice to avoid potential correct information loss for EU patients.
Résumé
Background: Medical professionals are aware that patients continue to use the internet as a medical information source. With the advent of government campaigns to increase awareness of data privacy and information sources, we investigate how the landscape of internet postings has changed for CF and how this could affect patients seeking online medical information. Methods: Key phrases relating to CF were identified by a CF multidisciplinary team and entered in Google Alerts with prospective tracking for 6 months in 2015. Alerts were also created for 3 non-orphan lung diseases (asthma, chronic obstructive pulmonary disease and lung fibrosis). These steps were repeated again in 2019 and the data compared. Results: In 2015, Asthma received the highest mean number of alerts per day (31.7), followed by CF (16.1), then COPD (14.6), and Lung Fibrosis (5.1). This changed in 2019 where CF was the highest with 19.5, followed by Asthma (11.5), COPD (10.3), and Lung Fibrosis (7.4). In both years, the USA generated (56%) the highest number of alerts for CF. There was an increased number of blocked articles in 2019 (540). In 2015, News (58%) was the most common category for CF alerts, but this changed to Financial/Marketing (35%) in 2019. In 2015 there was a small number of Social Media alerts recorded for all lung conditions;however, in 2019, there were none for the comparative lung conditions and only 3 for CF. Alert frequency for CF-related terms also increased in 2019. Conclusion: The landscape for internet postings for CF has changed. CF is now more commonly reported than other lung conditions and the ‘business of CF’ is now more frequently reported online while content from the general public has decreased (or is private). Medical professionals need to remain vigilant and increase awareness of information-dilution by monetary based media. A limitation of this study is that it predated the COVID-19 pandemic and it is suggested that future works revisit this at an appropriate time.
Résumé
Objective: Patients (F508del/F508del or F508del/MF) with severe CF (ppFEV1<40%) were not represented in the Phase 3 VX445 (Kaftrio®) [Table presented] clinical trials. We aimed to assess real-world efficacy, safety and tolerability in this cohort. Method: All patients with severe lung disease (ppFEV1<40%) attending our clinic eligible for Vertex's managed access programme who received treatment were assessed prospectively at 3 monthly intervals. Results: 7 of 8 patients remain on therapy. Irrespective of prior CFTR modulator therapy, notable improvements were observed (Table 1). After adjusting for time, there was a relative reduction of 68.89% IV and 21.43% PO antibiotic usage as well as a 66.9% reduction in hospital bed days. Improvements in CFQR-R and D domains and FACIT fatigue scores were observed. Patient 4 developed an erythematous diffuse rash on day 7 which resolved with antihistamines. No liver function abnormalities have been seen to date. Patient 6 died while on therapy due to multimorbidities including pulmonary embolism (Covid PCR and antibody negative), persistent pneumothorax and sepsis. Conclusion: This cohort demonstrates preliminary clinically meaningful real-world efficacy, safety and tolerability for patients (F/F, F/MF) with severe disease (ppFEV1<40%).