P412 A patient-led review of outpatient services following the COVID-19 pandemic and widespread introduction of highly-effective modulator treatments and remote monitoring devices

Journal of Cystic Fibrosis(2023)

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摘要
Adult Cystic Fibrosis (CF) care has changed significantly over recent years. During the COVID pandemic, many clinics become “virtual.” Within months, highly effective modulator therapies (HEMT), such as Kaftrio, were approved for ~90% of adults with CF(AWCF) in the UK, significantly improving quality of life. This period has also seen increased use of remote monitoring of nebuliser adherence (CFHealthHub) and blood sugars (Libre). Explore views and preferences of AWCF regarding outpatient care following recent developments in treatments and monitoring. An online survey was sent to all AWCF in our centre via text message. Paper/phone options were also available. The survey was sent to 323 patients;154 of whom have a CFHealthHub account;84 a Libre device. 45 AWCF completed the survey. The average rating (0–10) for the care received in face-to-face reviews was 8.88 (10 = excellent), compared with 8.31 for virtual, with a preference (32%) for future clinics to be a mixture of both, depending on need, every 3 months (34%). 67%(30) were on HEMT, 15%(7) were eligible but not taking due to choice or side effects and 18%(8) weren’t eligible. 77%(23) of those on HEMT felt the medication had changed how they recognise chest infections. 15 found it easier to identify deterioration since starting HEMT, whilst 8 found it more difficult. The most common symptom that triggered contact with the CF team has changed from increased cough 83%(24) prior to HEMT, to reduced exercise tolerance 69%(20) on HEMT, with 23%(7) finding it hard to notice changes without objective measures, such as spirometry, since HEMT. AWCF at our clinic felt there was no significant difference in the quality of care received in virtual compared to face-to-face reviews. This data provides insight into how we can support and educate AWCF regarding self-management and adapt our service to meet the changing needs of our cohort whilst maintaining quality of care.
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关键词
remote monitoring devices,outpatient services,patient-led,highly-effective
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