"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.

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.

Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.

Aim: To explore the relationship between social care-related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation.

Method: As part of a larger pre-post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables.

Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol.

Introduction: Developmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate information for caregivers. This can lead to increased distress and dissatisfaction with the healthcare system.

It's made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness.

Objective: For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era.

Method: Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children's Hospital were invited to participate.

Central serous chorioretinopathy associated with the use of ephedra.

Purpose: To report three cases of central serous chorioretinopathy (CSC) likely related to the use of body-building products containing ephedra.

Methods: Observational case series of three patients who presented with signs and symptoms of CSC. All cases had ocular coherence tomography and fluorescein angiograms to confirm the diagnosis.