title: Patient emotions and perceptions of antiepileptic drug changes and titration during treatment for epilepsy.
abstract: To investigate the impact of antiepileptic drug (AED) change and dose titration on the emotional well-being of patients with epilepsy.
  
  
  
  Members of an online epilepsy community were invited to voluntarily participate in an online survey. The cross-sectional anonymous survey consisted of 31 multiple choice questions balanced in terms of variety and positivity/negativity of emotions concerning participants' most recent AED change. To substantiate survey results, spontaneous comments from epilepsy-related online forums and social media websites that mentioned participants' experiences with AED medication changes (termed passive listening statements) were analyzed and categorized by theme.
  
  
  
  All 345 survey participants (270 [78.3%] female; 172 [49.9%] were 26-45years old) self-reported an epilepsy/seizure diagnosis and were currently taking seizure medication; 263 (76.2%) were taking ≥2 AEDs and 301 (87.2%) had ≥1 seizure in the previous 18months. All participants reported a medication change within the previous 12months (dose increased [153 participants (44.3%)], medication added [105 (30.4%)], dose decreased [49 (14.2%)], medication removed [38 (11.0%)]). Improving seizure control (247 [71.6%]) and adverse events (109 [31.6%]) were the most common reasons for medication change. Primary emotions most associated (≥10% of participants) with an AED regimen change were (before medication change; during/after medication change) hopefulness (50 [14.5%]; 43 [12.5%]), uncertainty (50 [14.5%]; 69 [20.0%]), and anxiety (35 [10.1%]; 45 [13.0%]), and were largely due to concerns whether the change would work (212/345 [61.4%]; 180/345 [52.2%]). In the text analysis segment aimed at validating the survey, 230 participants' passive listening statements about medication titration were analyzed; additional seizure activity during dose titration (93 [40.4%]), adverse events during titration (71 [30.9%]), higher medication dosages (33 [14.3%]), and drug costs (25 [10.9%]) were the most commonly noted concerns.
  
  
  
  Although the emotional well-being of patients with epilepsy is complex, our study results suggest that participants report their emotional well-being as negatively affected by changes in AED regimen, with most patients reporting uncertainty regarding the outcome of such a change. Future research is warranted to explore approaches to alleviate patient concerns associated with AED medication changes.
authors.affiliation: UCB Pharma, 1950 Lake Park Drive SE, Smyrna, GA 30080, USA. Electronic address: jesse.fishman@ucb.com.
authors.forename: Jesse
authors.initials: J
authors.lastname: Fishman
authors.affiliation: UCB Pharma, 1950 Lake Park Drive SE, Smyrna, GA 30080, USA. Electronic address: gregory.cohen@ucb.com.
authors.forename: Greg
authors.initials: G
authors.lastname: Cohen
authors.affiliation: Department of Clinical Neurosciences, University of Calgary, Cummings School of Medicine, Foothills Medical Center, 1403 29th St NW, Calgary, Alberta T2N 2T9, Canada. Electronic address: cbjoseph@ucalgary.ca.
authors.forename: Colin
authors.initials: C
authors.lastname: Josephson
authors.affiliation: St Mary's Hospital, 750 Wellington Ave, Grand Junction, CO 81501, USA. Electronic address: marietxmd@gmail.com.
authors.forename: Ann Marie
authors.initials: AM
authors.lastname: Collier
authors.affiliation: UCB Pharma, 1950 Lake Park Drive SE, Smyrna, GA 30080, USA. Electronic address: srikanth.bharatham@ucb.com.
authors.forename: Srikanth
authors.initials: S
authors.lastname: Bharatham
authors.affiliation: UCB Pharma, 1950 Lake Park Drive SE, Smyrna, GA 30080, USA. Electronic address: ying.zhang5@ucb.com.
authors.forename: Ying
authors.initials: Y
authors.lastname: Zhang
authors.affiliation: UCB Pharma, 1950 Lake Park Drive SE, Smyrna, GA 30080, USA. Electronic address: imane.wild@ucb.com.
authors.forename: Imane
authors.initials: I
authors.lastname: Wild
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000927:Anticonvulsants / Q000627:therapeutic use*; D003430:Cross-Sectional Studies; D057915:Drug Substitution / Q000523:psychology*; D004644:Emotions; D004827:Epilepsy / Q000188:drug therapy* / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D010465:Perception; D011446:Prospective Studies; D057566:Self Report; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
chemical_list: D000927:Anticonvulsants
keywords: Antiepileptic drug; Emotion; Physician empathy; Titration; Valence