Digital conversations about suicide among teenagers and adults with epilepsy: A big‐data, machine learning analysis

Abstract

Epilepsia. 2020;61:951-958. | 951 wileyonlinelibrary.com/journal/epi Abstract Objective: Digital media conversations can provide important insight into the concerns and struggles of people with epilepsy (PWE) outside of formal clinical settings and help generate useful information for treatment planning. Our study aimed to explore the big data from open-source digital conversations among PWE with regard to suicidality, specifically comparing teenagers and adults, using machine learning technology. Methods: Advanced machine-learning empowered methodology was used to mine and structure open-source digital conversations of self-identifying teenagers and adults who endorsed suffering from epilepsy and engaged in conversation about suicide. The search was limited to 12 months and included only conversations originating from US internet protocol (IP) addresses. Natural language processing and text analytics were employed to develop a thematic analysis. Results: A total of 222 000 unique conversations about epilepsy, including 9000(4%) related to suicide, were posted during the study period. The suicide-related conversations were posted by 7.8% of teenagers and 3.2% of adults in the study. Several critical differences were noted between teenagers and adults. A higher percentage of teenagers are: fearful of "the unknown" due to seizures (63% vs 12% adults), concerned about social consequences of seizures (30% vs 21%), and seek emotional support (29% vs 19%). In contrast, a significantly higher percentage of adults show a defeatist ("given up") attitude compared to teenagers (42% vs 4%). There were important differences in the author's determined sentiments behind the conversations among teenagers and adults. Significance: In this first of its kind big data analysis of nearly a quarter-million digital conversations about epilepsy using machine learning, we found that teenagers engage in an online conversation about suicide more often than adults. There are some key differences in the attitudes and concerns, which may have implications for the treatment of younger patients with epilepsy. |FALCONE Et AL.

Self‐injurious and suicidal behavior in young adults, teens, and children with epilepsy: A population‐based study

“…However, children and teens with epilepsy have poorer social competence, leading to a greater risk of social isolation 44 . In a recent study on digital conversations about suicide in teens with epilepsy, 30% expressed concern about the social consequences of epilepsy, and 29% were searching for emotional encouragement and support, highlighting the importance of social support 45 …”

“…44 In a recent study on digital conversations about suicide in teens with epilepsy, 30% expressed concern about the social consequences of epilepsy, and 29% were searching for emotional encouragement and support, highlighting the importance of social support. 45 One of the strengths of our study is its population-based design, which provides a true measure of risk, without selection bias. The REP, with its detailed medical record system, allows one to examine co-occurrence of diseases, and allows longterm follow-up of cases, often well into adulthood.…”

Glimpsing the Impact of COVID19 Lock-Down on People With Epilepsy: A Text Mining Approach

“…NLP methods are widely used in marketing and social sciences but they are under-represented in the study of chronic medical conditions such epilepsy (2)(3)(4). We think that language processing can be useful in describing interesting aspects of coping with chronic diseases such as epilepsy (4,5).…”

Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study

“…The authors conclude that their findings provide strong evidence indicating that PWE have serious concerns relating to intimacy and sexuality, with few resources available to help them deal with these issues [9]. Another study employed machine learning technology to explore data extracted from open-source digital conversations among teenage (13-19 years) and adult (20 years) PWE specifically relating to suicidality [10]. The search was conducted over 12 months and limited to conversations originating from the US Internet protocol addresses.…”

“…Most of the conversations relating to suicide among teenagers originated from message boards (such as the Epilepsy Foundation website) and topical sites (e.g., Medscape) (77%) rather than from social media (19%). Several key differences were noted between the conversations of teenage and adult PWE: a significantly higher proportion of teenagers vs adults was 'fearful about the unknown' (63% vs 12%; OR, 12.49; p < 0.001), concerned about the social consequences of seizures (30% vs 21%; OR, 1.61; p < 0.001), and sought emotional support (29% vs 19%; OR, 1.74; p < 0.001), whereas a significantly lower percentage of teenagers vs adults showed a defeatist ('given up') attitude (4% vs 42%; OR, 0.05; p < 0.001) [10]. The findings of these two studies therefore support the findings of the current study in further demonstrating that epilepsy severely impairs the day-to-day life (romantic/sexual relationships) and mental health (suicidal ideation) of PWE.…”