"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.

Caregiver Developmental and epileptic encephalopathies Epilepsy Genetic Information Paediatric Pilot Psychosocial

Journal

European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
ISSN: 1532-2130
Titre abrégé: Eur J Paediatr Neurol
Pays: England
ID NLM: 9715169

Informations de publication

Date de publication:
Nov 2023
Historique:
received: 23 02 2023
revised: 03 09 2023
accepted: 29 09 2023
pubmed: 14 10 2023
medline: 14 10 2023
entrez: 13 10 2023
Statut: ppublish

Résumé

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. 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. 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. 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.

Sections du résumé

BACKGROUND 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 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 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 CONCLUSIONS
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.

Identifiants

DOI: 10.1016/j.ejpn.2023.09.010 PMID: 37832466
pubmed: 37832466
pii: S1090-3798(23)00155-1
doi: 10.1016/j.ejpn.2023.09.010
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

94-104

Informations de copyright

© 2023 Published by Elsevier Ltd on behalf of European Paediatric Neurology Society.

Déclaration de conflit d'intérêts

Declaration of competing interest The authors declare that they have no competing interests. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Auteurs

Eden G Robertson (EG)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia. Electronic address: Eden.robertson@unsw.edu.au.

Natalie J Roberts (NJ)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia.

Fleur Le Marne (F)

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.

Erin Beavis (E)

Department of Neurology, Sydney Children's Hospitals Network, Randwick, NSW, Australia.

Rebecca Macintosh (R)

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.

Lauren Kelada (L)

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.

Stephanie Best (S)

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.

Ilias Goranitis (I)

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.

Kristine Pierce (K)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Randwick, Australia; Epilepsy Foundation, Surrey Hills, Melbourne, Victoria, Australia.

Deepak Gill (D)

TY Nelson Department of Neurology and Neurosurgery, The Children's Hospital at Westmead, Sydney, Australia; Kids Neuroscience Centre, Sydney, Australia.

Rani Sachdev (R)

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.

Ann Bye (A)

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.

Elizabeth E Palmer (EE)

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.

Classifications MeSH