Discover the untold stories and emotional journeys of families navigating the complexities of paediatric epilepsy surgery, as we delve into their perspectives and experiences.
– by James
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Patient, parent and carer perspectives surrounding expedited paediatric epilepsy surgery.
Salim et al., Epilepsy Res 2024
DOI: 10.1016/j.eplepsyres.2024.107309
Study Summary:
A study surveyed 205 patients, parents, and carers to gauge their perspectives on epilepsy surgery and their willingness to participate in a trial for expedited surgery for paediatric epilepsies with MRI visible lesions. The survey, conducted from February to May 2022, used electronic questionnaires distributed via social media, epilepsy charities, and societies. The majority of respondents who had experienced epilepsy surgery reported positive outcomes, with 90% noting seizure cessation or reduction.
Key Findings:
- Top postoperative priorities included seizure freedom (66%), quality of life (47%), seizure severity (30%), seizure frequency (28%), and independence (27%).
- 65% of participants supported expedited surgery for suitable patients, and 51% were willing to participate in a proposed trial.
- 37% were undecided about trial participation, often due to neurosurgery concerns.
- Parents and caregivers were more in favor of expedited surgery than patients themselves (p = .016).
- UK-based participants were more willing to join an expedited surgery trial compared to North American participants (p = .01).
Importance:
This study highlights a general openness among patients, parents, and carers to consider expedited surgery for lesional epilepsies. It also emphasizes the importance of seizure control, quality of life, and neuropsychological outcomes as treatment priorities. The findings suggest that a patient- and caregiver-focused trial could be feasible and beneficial, potentially leading to improved management strategies for paediatric epilepsy.
Contribution to Literature:
The study contributes to the literature by providing insights into the preferences and concerns of those affected by paediatric epilepsy regarding surgical interventions. It underscores the need for early surgical consideration and the potential readiness of the epilepsy community to engage in trials that could expedite surgery, potentially improving long-term outcomes.