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Cogent Medicine ; 8, 2021.
Article in English | EMBASE | ID: covidwho-1617070


Background: The COVID-19 pandemic posed unique challenges in the delivery of patient care across all subspecialties, including the paediatric cystic fibrosis (CF) service. In our Irish tertiary centre we sought to utilise technology to deliver the same standard of care to our patients whilst minimising their COVID-19 exposure risk. Methods: We established virtual CF outpatient appointments consisting of a consultant phone-call and subsequent contact with the different members of the multi-disciplinary team (MDT). Our "Drop-In" review service continued, with COVID-19 precautions added. Patient experiences of these clinics were evaluated using a five-point online questionnaire issued to parents at the end of 2020. Results: We achieved a response rate of 82 out of 125 (65.6%). A total of 50/82 (61%) found it "easy" to maintain contact with the CF team, with 7/82 describing it as either "somewhat difficult" or "difficult". In terms of OPD satisfaction as an alternative to face-to-face medical review, 67/82 (81.7%) described themselves as either "satisfied" or "somewhat satisfied" with the clinics. Only 2/82 (2.4%) were "dissatisfied" with the OPDs. A total of 66/82 (80.5%) felt it would be helpful to retain an element of the clinics going forward. The majority of respondents, 53/82 (64.6%), said that the pandemic had "no real effect" on their likelihood of attending for an in-person medical review, with 14/82 (17.1%) saying they were "much less likely" to attend. Only 3/82 were "more likely" to attend. Individualised comments were varied, with the increased use of technology, anxiety regarding COVID-19 exposure, and a desire to avoid the hospital, all frequent themes. Conclusion: Our results and feedback indicated a consistent parental desire to avoid the hospital and the perceived infection risk during the pandemic. However, our clinic arrangements did not increase parental feelings of isolation. The potential use of these clinics in conjunction with face-to-face visits should be considered as a viable option in paediatric CF outpatient management.

Journal of Cystic Fibrosis ; 20:S51, 2021.
Article in English | EMBASE | ID: covidwho-1368824


Background: Real-world, post-approval studies contribute significantly to the evidence surrounding the impact of new treatments, including CFTR modulators, but can be complex undertakings. Elexacaftor-tezacaftor-ivacaftor (ETI) was approved by EMA sooner than expected in August 2020 during a global pandemic. Method: RECOVER, a multi-centre, post-approval study examining the impact of ETI, and conducted in 8 clinical sites in Ireland and the UK over 2 years, examines important outcomes in children and adults prescribed ETI. The study will be conducted in 2 phases in line with ETI approval: 12+ and 6–11. In addition to routine data collected as part of normal care, key RECOVER endpoints include lung clearance index (LCI), spirometry-controlled CT, treatment adherence, GI symptoms, inflammation, liver disease markers, nasal inflammation and nitric oxide metabolism. Results: To date, 96 participants (56% female) out of a target of 137 in people with CFaged 12 and above, have been recruited (predominantly 12–18yrs to date). Recruitment and sample collection has been impacted by the effect of COVID-19 on CF care and CF centre attendance. Key challenges have included: Sputum collection (risks of induction and non-sputum producing participants) and coordination of study activities with limited clinic attendance. Despite this, key baseline data, prior to commencing treatment, has been successfully collected on the majority of participants to date. For subjects recruited to date, 56% have F508del/F508del and 44% F508del/minimum function mutations, mean age is 16.1 years, mean FEV1 83.6% (23–111%), mean LCI 12.2 (6.9–24.3). Recruitment and data collection is ongoing. Conclusion: Despite the impact of accelerated approval and COVID-19, we have been able to proceed with study initiation, recruitment and sample collection. Data from RECOVER and other international post-approval studies is likely to add significantly to our understanding of the impact of ETI on people with CF.