Experience of waiting for seizure freedom and perception of machine learning technologies to support treatment decision: A qualitative study in adults with recent onset epilepsy

Abstract

PurposeWith no reliable surrogate biomarkers for treatment response, people with epilepsy currently await the passage of time to determine whether prescribed treatments are effective. Few studies have examined the issues faced by people with epilepsy during this waiting period. We aim to explore the experiences of people with recently diagnosed epilepsy as they wait to achieve seizure freedom. MethodsWe purposively sampled adults of working age who had been diagnosed and treated for epilepsy for less than four years. Semi-structured interviews were undertaken between July and September 2021. A thematic analysis using a framework approach was performed. ResultsWe recruited 15 patients. Results revealed four main themes: 1) Impact on mental health, as people with newly diagnosed epilepsy described waiting for seizure freedom as a time of vulnerability, uncertainty, and confusion. 2) Participants described their life as “on hold”, prior to achieving effective seizure control 3) Difficulty navigating health systems to find and understand information about epilepsy, tests, and medications, and to find the ‘right’ health professional to address their needs. 4) Technology systems that support clinician decision making with selecting effective medications early after diagnosis were cautiously welcomed by participants. ConclusionInterventions are needed to reduce the negative impacts experienced by people who are newly diagnosed with epilepsy while waiting for effective seizure control. Technology systems that support clinician decision making were acceptable, as people with epilepsy sought accessible and effective solutions to restore a sense of control in their lives.