Patient and carer perspectives on the use of video consultations in the management of the ketogenic diet for epilepsy

Vanessa Bh Bara; Natasha Schoeler; Jennifer H Carroll; Zoe Simpson; Tracy Cameron; Ketogenic Dietitians Research Network KDRN

doi:10.1016/j.yebeh.2023.109280

Patient and carer perspectives on the use of video consultations in the management of the ketogenic diet for epilepsy

Epilepsy Behav. 2023 Aug:145:109280. doi: 10.1016/j.yebeh.2023.109280. Epub 2023 Jun 12.

Authors

Vanessa Bh Bara¹, Natasha Schoeler², Jennifer H Carroll³, Zoe Simpson⁴, Tracy Cameron⁵; Ketogenic Dietitians Research Network KDRN

Affiliations

¹ Department of Nutrition and Dietetics, Bristol Royal Hospital for Children, Bristol, UK. Electronic address: vanessa.bara@uhbw.nhs.uk.
² UCL Great Ormond Street Institute of Child Health, London, UK; Dietetic Department, Great Ormond Street Hospital for Children, London, UK.
³ Faculty of Health, University of Plymouth, Plymouth, UK.
⁴ Dietetic Department, Great Ormond Street Hospital for Children, London, UK.
⁵ Paediatric Dietetic Department, Royal Aberdeen Children's Hospital, Aberdeen, UK.

Abstract

Background: The COVID-19 pandemic resulted in a significant change in the way healthcare was delivered worldwide. During this time, a survey of Ketogenic Dietitians Research Network (KDRN) members found that all respondents expected digital platforms for clinics and/or education to continue post-pandemic. As a follow-up to this, we surveyed views about video consultations (VCs) of patients and carers of those following the ketogenic diet for drug-resistant epilepsy.

Methods: The Surveymonkey^TM survey was distributed on Matthews' Friends and KDRN social media platforms and emailed from five United Kingdom ketogenic diet centers to their patients/carers.

Results: Forty eligible responses were received. More than half of the respondents (23, 57.5%) had attended a VC. Eighteen respondents (45%) would like to have VCs for most (categorized as approximately 75%) or all of their consultations. Half as many (9, 22.5%) would not like video consultations. The most common benefits selected were saving travel time (32, 80%), less stress of finding somewhere to park and not having to take time off work (22, 55% each). Twelve (30%) responded that VCs lessened environmental impact. The most common disadvantages selected were not being able to get blood tests/having to make a separate consultation for blood tests (22, 55% overall), not being able to get weight or height checked/having to make a separate consultation for this and it is less personal/preferring face-to-face (17, 42.5% each). Three-quarters (30 respondents) felt it would be very easy or easy to accurately weigh the patient when not attending an in-person consultation.

Conclusion: Our results suggest that many patients and carers would welcome the option of VCs as well as face-to-face consultations. Where possible and appropriate patients and their families should be offered both options. This is in line with the NHS Long-Term Plan and the NHS response to climate change.

Keywords: COVID-19 Pandemic; Drug-resistant epilepsy; Ketogenic diet; Patient experience; Telehealth; Telemedicine.

MeSH terms

COVID-19*
Caregivers
Diet, Ketogenic* / methods
Drug Resistant Epilepsy*
Humans
Pandemics
Referral and Consultation
Telemedicine*