PTOTSLPCohortDevelopmental medicine and child neurology2026

Personalized care of paediatric drug-resistant epilepsy in Africa: A single-centre pilot study utilizing mobile health and genetic testing.

Ian S Olivier, Karen Fieggen, Sandra Komarzynski and 6 others

PMID 40836609

WHAT IT FOUND

Caregivers reported far fewer seizures via an app than appeared in clinic records.

Wearables revealed significantly lower physical activity and sleep quality than parents realized, though engagement dropped by half over six months.

Key findings

01App-based reporting captured a median of 2.0 seizures per month, compared with 8.0 per month in pre-study clinic records and 5.5 during the study.

02Wearable data showed participants had significantly less nocturnal sleep and deep sleep than typically developing peers, despite caregivers reporting normal sleep duration.

03Engagement with the wearable device declined substantially, with only 59.5% of participants still using it at six months.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The study was a small pilot with only 39 completers, limiting statistical power and generalizability. Heart rate data was excluded because the wearable device did not record it consistently. Engagement with the technology dropped significantly over time, with only about 60% of participants still using the device at six months, which may bias the later data. Clinicians were aware of the app's use, which may have influenced how they recorded seizures in clinic notes. The genetic panel had a low diagnostic yield (7.5%) compared to literature, possibly due to the specific panel design or the high frequency of non-genetic etiologies in this cohort. Selection bias was possible because inclusion depended on parental consent rather than clinical phenotype.

Declared interests

Two authors are employees or shareholders of Aparito, the company that helped design the mobile application used in the study. The work was funded by the Newton Fund, South African Medical Research Council, and the National Research Foundation of South Africa.

The easy way to misread this

Do not conclude that the app accurately reflects true seizure frequency compared to clinic records. The lower counts in the app may reflect under-reporting by caregivers, recall bias in clinic records, or technical issues, and the study design cannot definitively separate these factors.

Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →