ABSTRACT
Objectives: The All Wales Adult Cystic Fibrosis Service (AWACFS) developed a Virtual Healthcare Hub (VHH) during the COVID-19 pandemic to minimise risk whilst continuing patient care. The VHH consists of virtual multidisciplinary team (MDT) clinics, leisure centre, individual physiotherapy reviews and group connects and Q+A sessions. This study explored patient and staff perceptions of the VHH and how this could be improved in the future. Methods: Online patient and staff questionnaires evaluating the use of the VHH in the AWACFS during the COVID-19 pandemic were gathered between 23/12/2020 and 20/01/2021. Results: 67 patient questionnaires were analysed. The most widely used service (92%) was virtual MDT clinics with 83% finding them “very” or “extremely helpful”. 72% of participants would ‘often’ or “always” use virtual MDT clinics following the COVID-19 pandemic. Group connects and Q+A sessions run by the CF psychosocial team were particularly popular, with 85% of users finding these “very” or “extremely helpful”. 77% of patients found the virtual leisure centre run by the physiotherapy team “very” or “extremely helpful”. 20 staff questionnaires were analysed. 95% perceived the VHH to be either “very” or “extremely helpful” to deliver care and 100% of service providers would like to continue delivering the VHH in the future. Both patients and staff considered “reduced risk of infection by COVID-19/other” as the highest ranked advantage of connecting virtually. The highest ranked disadvantage by patients was “preference to see professional in person” and by staff “ability to address physical concerns is limited”.Staff ranked “technological difficulties” as the main barrier and “better technology” as the main way to improve CF virtual services in the future. Conclusion: Both patients and staff considered the majority of virtual connections provided to be successful and helpful during the COVID-19 pandemic, with staff keen to support these VHH services and adapt based on patient feedback.
ABSTRACT
Objectives: The effect of the COVID-19 pandemic on the quality of life (QOL) of people with cystic fibrosis (pwcf) remains unclear. This study investigated the change in QOL, measured by the CFQ-R, in adult pwcf prior to and during the COVID-19 pandemic. Methods: The CFQ-R scores of 88 adult pwcf completed at two routine clinic appointments (one prior to first COVID-19 case in Wales 28/2/20 and one post) were retrospectively reviewed. Any change in CFTR modulator therapy between these dates was recorded along with demographics, FEV1% and BMI. Results: 88 (52 male, 36 female) with mean age, FEV1% and BMI of 32.2 years, 61.6% and 22.7 kg/m2 respectively had two consecutive CFQ-R results in the above time frame. Overall, mean social domain scores significantly declined (60.4 to 54.2 p < 0.001) and mean emotion scores fell from 69.3 to 65.9 (p = 0.07). Results did not vary between males and females. 59/88 had a change in modulator status during this period, mainly commencing Symkevi® or triple modulator therapy, and this group experienced a significant increase in FEV1% (p < 0.01) and BMI (p = 0.02) and a statistically significant improvement in every domain of the CFQ-R except emotion, eating, digestion and social. Their mean social score dropped significantly 59.5 to 54.2 (p = 0.018). Of the 29 pwcf with no change in modulator status, there was no significant change in FEV1% or BMI. Mean emotion domain scores, which assesses feelings of being sad, useless, lonely and difficulty making future plans, significantly worsened from 78.1 to 70.6 (p = 0.018). Mean social scores decreased from 62.1 to 54.2 (p = 0.037). Conclusion: This is the first study looking at QOL during COVID-19 in pwcf. During the COVID-19 pandemic there have been developments in access to highly effective modulators, but despite improvements in FEV1%, BMI and many CFQ-R domains suggesting improved health, emotion and social domain scores fell. This is likely to reflect the effect of the COVID-19 pandemic.
ABSTRACT
Background: Guidelines recommend all adults with CF in the UK attend their specialist center at least four to six times a year. Hospital appointments require a significant period of time, which can compound disruption of education, employment and personal life. Virtual communications (VC) have the potential to address these issues. The COVID-19 pandemic necessitated an immediate change to UK outpatient care. To continue with service provision we established four VC: multi-disciplinary team (MDT) clinic, psychology sessions, gym/physiotherapy (PT) and a weekly patient question and answer (Q+A) session with the CF MDT. Objective: To evaluate patient response to VC and determine how to incorporate into future CF care. Methods: We created ten fixed response and four free-text Smart- Survey questions, and sent a link valid for 14 days to all recorded All Wales Adult CF Center (AWACFC) patient email accounts. The anonymized data were exported to Microsoft Excel 2013, inputted to SPSS version 23 and analyzed. The independent samples t-test and one-way ANOVA calculated statistical significance in regards to age, sex, travel distance and employment status on VC use. Free text was analyzed by the authors and coded using a systematic thematic analysis to précis the content. Results: Survey response rate was 26% (72/274;37 female, 35 male). A total of 82% reported accessing MDT clinic, 14% psychology, 32% gym/ PT and 28% Q+A. MDT clinic was reported as extremely or very helpful by 86%;89% reported psychology sessions as extremely or very helpful;83% reported gym/PT as extremely or very helpful;67% reported Q+A as extremely or very helpful. Emerging themes on the advantages of VC were;the ability to interact with other CF patients, reduction in appointment burden, infection risk, travel time and disruption to personal life. Disadvantages were;connectivity and technical issues, lack of human interaction, physical examination, tests and procedures. All patients were asked about engagement with VC post-COVID-19;89% reported they would use MDT clinic in the future, 84% of these reported previous use. A total of 36% reported they would use psychology in the future, 70% of these reported previous use;52% reported they would engage with gym/PT in the future, 90% of these reported previous use. A total of 39% reported they would engage with Q+A in the future, 85% of these reported previous use. Patients who had engaged with gym/PT, psychology or Q+A were more likely to want to engage in the future (p <0.01). Females were more likely to engage with psychology currently and in the future (p<0.01). Patients with a greater travel distance were more likely to engage with gym/PT currently (p <0.04) and in the future (p<0.01). Conclusion: Our evaluation demonstrates a positive patient response to VC, and desire for future access. We continue to refine the VC service and improve technical issues. Patients who had already engaged with VC were more likely to report future use, therefore we will continue encouraging patients to trial multiple modalities. Where appropriate we will offer alternate virtual and face-to-face MDT clinics as part of routine care. The aim is to establish a more patient-centered approach, improve concordance and ultimately outcomes.