Patient and Public Involvement and Engagement for digital innovation to improve Infantile Spasms Syndrome Diagnosis

Objective
Diagnosis is often delayed in Infantile Spasms Syndrome (ISS) and an EEG is required for confirmation of diagnosis and the timely availability is variable. We aim to co-develop a remote EEG and AI detection in partnership with clinical, engineering, AI experts and patient groups. Here we report our initial PPIE work.
Methods
We conducted a survey of families who had lived experience of an ISS diagnosis through the UKIST members and parents attending the Edinburgh Children’s hospital (February-August 2024). This survey included questions (structured and free text) regarding positive and negative experiences within the healthcare setting surrounding their child’s diagnosis and also thoughts on digital solution to improve their experience. Free text information was analysed qualitatively.
Results
Of the seventy participants, one in three patients had a diagnostic delay of more than 30 days. We received rich qualitative data. The common themes emerged were dismissal of parental concerns, misdiagnosis, lack of EEG facilities and lack of access to experts/paediatric neurologists.
Themes for the desired remote monitor solution are compact, quiet and lightweight device, ability for longer record while maintaining daily routine and maximise the child’s comfort. Some specific suggestions included adjustable electrode or wireless cap that would require a single fitting.
Thirty-three (~50%) of respondents expressed a desire to participate in a focus group to further shape our research, with twelve parents emailing us their contact details directly.
Conclusion
In this study, from the parents experience we confirm there is often a delay in diagnosis of ISS. Parents also feel there is a clear need for a better solution and this must be co-developed with individuals who have lived experience. There is a great willingness to participate in further exploration and the themes that are derived will be taken forward for designing our product and further study design.