ABSTRACT
Introduction: COVID-19 brought about a rapid change in the way diabetic follow up services were run in our local pediatric unit. Appointments were initially made via telephone with the introduction of video clinics a short time later. A survey of caregiver and patient views of virtual clinics in 2020 showed high satisfaction scores with these appointments. Face-to-face (FtF) appointments have restarted but virtual appointments have continued to run alongside. Objective(s): A repeat survey in 2022 aimed to re-assess families' experience of virtual clinics and their views on the use of virtual clinics as part of their long-term follow-up. Method(s): Two surveys were carried out between June to July 2020 and March to April 2022. Caregivers were selected at random from the patient list and contacted by telephone. An oral survey was completed with responses collated on a Microsoft form. Result(s): A 100 responses were collected in both surveys. This covered a range of patient ages and treatment modalities. Satisfaction with virtual appointments remained high with a rating of 4.6 and 4.59 out of 5 respectively for the 2020 and 2022 survey. Virtual appointments requests as part of follow-up increased from 51% to 77%, with video preferred to telephone (65% vs. 12%). Pump and CGM data downloading pre-clinic dropped from 66% to 56%. Conclusion(s): The majority of patients and caregivers found virtual clinic appointments a positive experience and are keen to see them continue even though COVID-19 restrictions have lifted. This will have significant impact and potentially substantial savings in the way follow-up services are designed. Digital poverty (access to devices/ IT knowledge) remains a barrier to some patients accessing virtual appointments. Patient/caregiver preferences and individual circumstances must be taken into account when redesigning follow-up services.
ABSTRACT
Background: Due to disease progression, people with cystic fibrosis (PwCF) were expected to lose 1–2% of the FEV1% predicted per year along with decreased exercise tolerance, malabsorption and weight loss. Research into the development of CFTR modulators has dominated PwCF research, and in 2020, NHSE agreed to a deal which made approximately 80% of PwCF eligible for Triple Modulator Therapy (Kaftrio®). The combination of the elexacaftor/tezacaftor/ivacaftor has shown improvements in the structure and function of the NaCl channels. PwCF reported improvements in: energy, strength, breathing, sputum production, diabetes control, BMI and lung function (Edgeworth 2017).Wewere therefore interested to observe the effects of Kaftrio® on our patient group at Nottingham University Hospitals Trust (NUH) Objectives: To observe the physiological effects of Kaftrio® in regard to weight, FEV1, grip strength and 6MWT in adult PwCF at NUH Methods: A retrospective observation of 99 eligible patients who attended the NUH (Sept 20-March 21) was undertaken on initiation of on-license Kaftrio®. Patients were seen on initiation and after 3 months. Data was collected as part of their routine MDTAnnual Assessment process (Weight, FEV1, grip strength and 6MWT). Results: Of the 99 patients (aged 18–50) we observed, weight +4.14% (n = 55), FEV1 +22.5% (n = 42), grip strength − 0.48% (n = 41) and 6MWT +1.14% (n = 36). Limitations: Patient dissent to assessments, interrater reliability, variability in spirometry device, COVID-19 pandemic restrictions and side effects resulting in termination of Kaftrio®. Conclusions: Overall improvement occurred in all areas except for grip strength. It is encouraging to see a general improvement within our cohort of patients which reflects changes aligned with international research. However, the reduction in chest symptom burden does pose the question of the nature of thephysiotherapy involvement in cystic fibrosis for thefuture.