Objectives To demonstrate proof of concept/feasibility of a novel digital platform using real-time capture of patient-reported outcomes for real-world research involving patients with epilepsy.
Methods The phone app collects multi-faceted patient-reported outcomes including seizure frequency, medication side effects, mood, anxiety, quality of life and cognition along with voice and digital images. Patients are invited through a national consortium of 18 adult epilepsy centres in Australia. The patient-reported information potentially allows feedback to their treating specialists and tertiary centre in near real-time, along with deidentified aggregation across all participating centres for comparison. Currently, more than 40 patients are enrolled. We present the outcomes of one patient, with the longest-running data points. The new platform was developed by KeyLead Health TM, Melbourne Australia.
Results The results report a single patient’s composite scores for mood, sleep, cognition seizures and medication side-effects from the first 1.5 months.
Conclusions Our digital phone platform has the potential to facilitate the more effective and efficient capture of longitudinal data enhancing real-world research data integrity along with patient and specialist engagement.
Table: Patient reported outcomes for single patient captured using digital phone app date 4/1 7/1 10/1 15/1 20/1 1/2 15/2 18/2
Side effects 4.5 3.8 3.4 3.4 3.4 3.4 3.3 3.8
Memory 9 1 7 5 5 6 7 6
Seizures 3 0 0 1 1 1 2 0
Reaction time 7.7 7.1 12.4 7.0 7.7 7.7 7.9 6.7
Mood 17 16 15 15 12 15 18 16
Sleep 12 6 8 4 3 10 8 5
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