ABSTRACT
Objective: Matthew's Friends KetoCollege is a unique training programme developed by an international board of expert medical and dietetic mentors who specialise in ketogenic diet (KD) therapies. Established in 2016, KetoCollege aimed to meet the demand for credible, unbiased training, improving delegates confidence with KD and enabling them to enhance the service provided to their patients. It offers training in the scientific background and practical aspects of the implementation of KD therapies for international professionals new to KD or those requiring a refresher. Here we aimed to evaluate the programme and look to future development. Method(s): KetoCollege is a 3-day education programme of lectures, workshops and networking, run yearly since 2016, approved by the British Dietetic Association and Royal College of Paediatrics and Child Health. It quickly adapted to the COVID pandemic restrictions and moved online in the past 2 years. Delegates complete an evaluation form, providing feedback which informs future developments. Result(s): KetoCollege has trained 885 professionals from 51 countries across seven programmes. Participant evaluations report improved knowledge, understanding and confidence with KD therapy. Delegates develop ideas and set goals to inform local service development and changes to clinical practice. Feedback consistently identifies the need for a follow-on advanced education programme in KD therapies to address more complex topics, advanced fine tuning and clinical case scenarios. Conclusion(s): KetoCollege is a unique, unbiased and well-respected education programme which successfully enhances delegates' knowledge and confidence to implement KD therapies. This enhances accessibility to KD therapies for families and adults internationally. KetoCollege Advanced is currently under development, ready for launch in 2023 in response to delegate feedback.
ABSTRACT
Purpose: A government funded;interactive cloud storage platform (www.vcreate.tv/neuro) allowing patients and carers to upload video and linked metadata for neurological diagnosis was established during the Covid-19 pandemic. We describe the utility for epilepsy and paroxysmal disorders in 16 centres with the first centre active from 01/05/2020. Method: Users are invited to register and utilise a password and passcode for access. Videos are uploaded with a structured history. The clinician classifies seizure type, syndrome, aetiology or other diagnosis using drop-down menus. Users and clinicians complete online evaluations. Postcode allows linkage to user index of deprivation score. Consents for teaching by the local clinical team and research within a national neurology video research database with research ethics approval are optional. All data, except the video file, transfer to the electronic patient record. Result: To 24/03/2021, 4582 video uploads (4024 paediatric, 558 adult), 1889 patients (1594 paediatric, 295 adult). 400-600 new videos per month. 323 physician and nurse users. Deprivation scores indicate equitable use across socio-economic groups. Paediatric classification: non-epileptic 55%, epileptic (36.5%), unknown (8.5%). Adult: non-epileptic 73.5% (34% dissociative, 41% movement disorders), epileptic 11%, unknown 15.5%. Paediatric seizure types include: focal impaired awareness (19%), generalised tonic clonic (18%), focal clonic (17%), epileptic spasms (13%). Non-epileptic events: tics (13%), normal behaviour (12%), sleep myoclonus (10%) gratification (8%), dissociative (5%). >95% carers ranked the system positively. Clinicians report video prevented face-to-face review in 57%, investigations in 44% and reduced time to diagnosis in 97%. Median time to review video and classify was 5 minutes. Conclusions: Remote care is facilitated, investigations prevented or prioritised, with rapid diagnosis and efficiencies in the patient pathway. A rapidly growing teaching resource and research database for semiology and machine learning diagnostics for paroxysmal disorders has been established. We plan to establish the system in low-income countries without cost.
ABSTRACT
The COVID-19 pandemic has created an immense pressure on healthcare providers, resulting in a shift to remote consultations and the redeployment of healthcare workers (HCWs). We present survey data from the United Kingdom (UK) HCWs to outline how changes in healthcare provision impact clinicians' wellbeing and ability to provide adequate care. We designed an online survey to gather the experiences of HCWs providing care to people with epilepsy. We received seventy-nine responses from UK-based HCWs, of whom 43% reported an impact on their mental health. Changes to service delivery have resulted in 71% of clinicians performing > 75% of their consultations remotely. Diagnosing and treating epilepsy has changed, with a fifth of respondents being significantly less confident in diagnosing epilepsy. Ultimately, these results show that COVID-19 has had an overall negative impact on HCWs and their ability to provide epilepsy care. These results must be considered when reorganizing health services to ensure optimal outcomes for people with epilepsy.
ABSTRACT
Objective: To garner the views and experiences of young people with epilepsy and caregivers regarding the impact of the COVID-19 pandemic and subsequent restrictions in the UK. Methods: An online survey was used to explore the views of young people (n=71) with epilepsy and caregivers (n=127) between 4th and 28th June 2020. It included sections on the impact of the COVID-19 pandemic and associated restrictions on the child's epilepsy and on child and caregiver wellbeing. Results: One in 3 young people and one in four caregivers reported that the young person's seizures had increased during lockdown;only 7% of parents and 10% of young people reported a decrease. Half of young people reported that they were more reluctant to go to hospital for appointments. The majority of young people reported their sleep (73%), mood (64%) and levels of physical activity (53%) had deteriorated. However, 46% reported there had been positive aspects to the restrictions (eg, spending more time with family). 19% of parents reported difficulties getting their child's medication whilst 25% reported their child had clinical procedures/investigations (such as EEG/MRI/-surgery) cancelled during restrictions. Caregivers reported that their child's mood (60%), sleep (65%) and behaviour (50%) had deteriorated during the restrictions. The majority of caregivers experienced increases in stress (70%) anxiety (66%) and difficulties with sleep (58%). Epilepsy nurses, online support groups/charity websites were seen as the most helpful supports for both young people and parents/carers during the restrictions. Conclusions: Survey results indicate that the pandemic and associated restrictions have had a negative impact on young people with epilepsy. Perceived increases in seizures and reluctance to go to hospital are likely to impact on epilepsy management. The wider psychosocial impact is also likely to be significant with increases in child and parent mental health problems in an already vulnerable group.