"Somewhere to turn to with my questions": A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic Encephalopathy

Eden G Robertson; Natalie J Roberts; Fleur Le Marne; Erin Beavis; Rebecca Macintosh; Lauren Kelada; Stephanie Best; Ilias Goranitis; Kristine Pierce; Deepak Gill; Rani Sachdev; Ann Bye; Elizabeth E Palmer

doi:10.1016/j.ejpn.2023.09.010

"Somewhere to turn to with my questions": A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic Encephalopathy

Eur J Paediatr Neurol. 2023 Nov:47:94-104. doi: 10.1016/j.ejpn.2023.09.010. Epub 2023 Oct 7.

Authors

Affiliations

¹ Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia. Electronic address: Eden.robertson@unsw.edu.au.
² Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia.
³ Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia; Department of Neurology, Sydney Children's Hospitals Network, Randwick, NSW, Australia.
⁴ Department of Neurology, Sydney Children's Hospitals Network, Randwick, NSW, Australia.
⁵ Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia; Centre for Clinical Genetics, Sydney Children's Hospitals Network, Randwick, NSW, Australia.
⁶ Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, High Street, Randwick, Australia.
⁷ Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia; Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia; Sir Peter MacCallum Cancer Centre Dept of Oncology, University of Melbourne, Melbourne, VIC, Australia; Australian Genomics Health Alliance, Murdoch Children's Research Institute, Melbourne, Australia.
⁸ Australian Genomics Health Alliance, Murdoch Children's Research Institute, Melbourne, Australia; Health Economics Unit, Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Australia.
⁹ Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia; Epilepsy Foundation, Surrey Hills, Melbourne, Victoria, Australia.
¹⁰ TY Nelson Department of Neurology and Neurosurgery, The Children's Hospital at Westmead, Sydney, Australia; Kids Neuroscience Centre, Sydney, Australia.

PMID: 37832466
DOI: 10.1016/j.ejpn.2023.09.010

Abstract

Background: Caregivers of a child with a Developmental and Epileptic Encephalopathy (DEE) often report challenges accessing relevant and understandable information regarding their child's condition. We developed GenE Compass, an information linker service where caregivers are invited to submit questions and receive high-quality, personalised reports. We conducted a pilot evaluation to determine the feasibility and acceptability of GenE Compass.

Methods: We invited eligible caregivers to complete a baseline questionnaire (Q1) prior to receiving three months access to submit an unlimited number of questions to GenE Compass. We then invited caregivers to complete a follow-up questionnaire (Q2) and optional interview. Caregivers also had the opportunity to share report-specific feedback at the time of receiving each report.

Results: Seventy-two caregivers completed Q1, of which 41 submitted at least one question (range = 1-7). We received a total of 76 questions. The median turnaround time was 12 working days for our information linker (range = 1-28). Thirty-seven caregivers completed Q2, of whom 32 submitted at least one question (87 %). Overall, caregivers were highly satisfied with GenE Compass and their reports, and indicated that they would use it in the future if they had another question. Caregivers' qualitative data from Q1 and interviews highlighted the ongoing need for an information linker service like GenE Compass due to a lack of understandable information and limited resources, and the benefit in reducing burden of constant information searching.

Conclusion: Our study shows that GenE Compass is feasible with the appropriate allocation of resources and highly acceptable to caregivers who have a child with a DEE.

Keywords: Caregiver; Developmental and epileptic encephalopathies; Epilepsy; Genetic; Information; Paediatric; Pilot; Psychosocial.

MeSH terms

Brain Diseases*
Caregivers*
Child
Humans
Surveys and Questionnaires