Résumé
Background: COVID-19 made it necessary to establish telemedicine as a first default for reviews in a previously telemedicine-naive clinic. Objectives: To establish and assess telemedicine in the first 6 months of COVID-19 pandemic. Methods: Utilising a multidisciplinary team (MDT) approach, we established a ‘Covid Pack’ of medical equipment (sent to each patient) and a suitable video conference platform to replicate the in-person clinic format. The virtual clinic was then rolled out (94 patients reviewed in the first 6 months). A retrospective chart review comparing patients’ clinical metrics pre- and post-rollout was then conducted. Usability and Acceptance were also measured with patients (p) and staff (s) via a number of standardised surveys: System Usability Scale (SUS), TeleHealth Usability Questionnaire (TUQ), IT Familiarity, and our own quality-survey. Results: The Covid Pack permits adequate spirometric assessment of patients (mean bias −2.5%). Preliminary data collected from 52 patients and 11 staff members show an overall positive response to our remoteclinics. The SUS received a median score of 90 (p) and 87.5 (s) out of 100. The TUQ received a total score of 6.52 (p) and 6.1 (s) out of 7, with ease of Use and Learnability as the highest-rated category in the TUQ (median 7, range 3.6–7) and Reliability as the lowest-rated category (median 5.33, range 2–7). The IT Familiarity questionnaire received an average median score of 1 (very familiar) from both groups. Qualitative data collected via a custom survey show that while patients and staff are positive to the convenience of the remote clinic, the facility for an in-person. face-to-face review remains important, as does good WiFi connection. Conclusion: Initial 6-month data are positive for the remote clinic as a first default during the pandemic. Preliminary data shows a positive trend for the usability and acceptance by all stakeholders, but it is not a replacement for physical clinics.
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%).
Résumé
Background: Patients often contact the cystic fibrosis (CF) multidisciplinary team (MDT) via phone to express health-related concerns in between the standard quarterly review. This often requires a phone evaluation before organising an unscheduled appointment. These sporadic interactions heavily affect available resources. This strain on resources will be further impacted when considering that data from the European CF registry predicts that there will be a 75% increase in the adult CF population by 2025. Furthering this, CF services are increasingly more strained now during the global Covid-19 pandemic. Objective: This research first sets about to design and develop a Virtual Doctor system based on the expertise of a MDT through multiple consultations. Next, pilot data pertaining to user acceptance and experience with using this novel technology is gathered. We therefore aim to investigate if the use of such technology can be beneficial in a specific clinical setting. Method: The final collaborative-design of the Virtual Doctor comprises several technical features and is primarily a voice synthesis system allowing the patient to interact with natural language. The virtual doctor asks the patient questions regarding their health concerns and can collect real-time clinical metrics such as FEV1, oxygen saturation, temperature. The patients’ responses and metrics are then compared to baseline values calculating a score which stratifies a response time from the CF team. This information is then collated in a report and sent to the CF team for action. Future works: Initial stress testing of the technical performance is now complete. Supportive visual media to improve coaching of using clinical devices have now been implemented in preparation for patient pilot testing which is currently ongoing. It is anticipated that a virtual system such as the Virtual Doctor will become more accessible and acceptable to patients, especially during the Covid-19 pandemic.