Authors :
Presenting Author: Natasha Schoeler, PhD RD – UCL Great Ormond Street Institute of Child Health
Elizabeth Neal, PhD RD – UCL Great Ormond Street Institute of Child Health
Valerie Aldridge, - – Matthew's Friends
Lenycia De Cassya Lopes Neri, PhD – University of Pavia
Anita Devlin, MD – Great North Children's Hospital
Ruth Fisher, RD – Oxford University Hospitals
Humzah Hameed, - – UCL
Zoe Simpson, RD – Great Ormond Street Hospital for Children
Victoria Whiteley, RD – Royal Manchester Children's Hospital
J. Helen Cross, M.B., Ch.B., PhD – University College London NIHR BRC Great Ormond Street Institute of Child Health
Glenn Robert, PhD – King's College London
Rationale:
Ketogenic diet therapy (KDT) is an effective treatment option for children and young people with drug-resistant epilepsy. However, they require stringent dietary restriction. In UK centres, only 55% of children referred for KDT actually start diet and, of those who do start, 25% discontinue before the recommended 3-month trial. We aim to better understand the reasons behind this and design an intervention to help support initiation, adherence and continuation of KDT.
Methods:
Using experience-based co-design methodology, we collected data on facilitators and barriers to starting and staying on KDT from: i) a scoping review; ii) an international survey of parents/carers; iii) interviews of young people who are/were on KDT, or who were referred but chose not to start diet, and their parents/carers; iv) interviews and observation of ketogenic healthcare professionals.
Interview and observation data were analysed by thematic framework analysis, underpinned by the Perceptions and Practicalities Approach. A ‘catalyst’ film was produced, used to help ‘prompt’ participants as they work together to pinpoint areas to target for improvement and co-design interventions to help future families.
Results:
63 participants were recruited, of which 10 young people, 24 parents/carers and 16 healthcare professionals were interviewed. 60 articles were included in the scoping review. 86 parents/carers responded to the survey.
14 themes were identified, including trust and communication with healthcare teams, individualisation, knowledge and empowerment, finance and practicalities, and peer/network support.
The ‘top 5’ intervention areas to help future families were Education for families, Social/emotional support, Clinical Psychology support, Healthcare professional awareness/education, and a Keto app. So far, an ‘alert’ bracelet to wear when admitted to local hospital has been created and distributed via a national ketogenic charity, a resource has been developed outlining psychosocial support available to keto families, and short films are freely available for healthcare teams to share with new families who are thinking about starting, or have recently started a ketogenic diet.
Conclusions:
The facilitators and barriers to starting and staying on KDT are multi-factorial and extend beyond the realm of the individual. Our findings are helping shape an intervention ‘package’ to support future families, ultimately important for effective use of healthcare system resources by aiming to reduce KDT dropout rates and support KDT adherence.
Funding:
Funded by National Institute for Health and Care Excellence and Rosetrees charity. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.