Decision Making Among Patients with Unruptured Aneurysms: A Qualitative Analysis of Online Patient Forum Discussions.

BACKGROUND:Deciding to treat unruptured intracranial aneurysms (UIA) involves discussion with patients about outcomes data and personal attitudes toward risk of rupture versus procedural complication risk. We performed a qualitative analysis of online interpatient discussions to investigate perspectives on medical decision making. METHODS:On an aneurysm-specific forum, we identified patient conversation threads created between December 3, 2016 and December 3, 2018 containing discussion of medical decision making. These threads were analyzed using an adapted grounded-theory approach. Two researchers coded each thread and discussed discrepancies until consensus was reached. Coded content was analyzed to identify emergent themes. RESULTS:We analyzed 40 threads from a foundation-sponsored intracranial aneurysm-specific patient forum in the public domain. There were 110 user accounts, contributing 527 posts of average length 108 words. Fifty-seven users described diagnosis of UIA without history of rupture, and 20 described presentation with rupture. Patients 1) felt fortunate for diagnosis with UIA but were challenged by decision making and concern for rupture, 2) desired treatment by providers with large case volumes, clear communication, and an unbiased approach to decision making, 3) acted on qualitative understandings of individual risk, 4) considered psychological, social, and clinical factors in forming preferences for management, 5) sought information for purposes other than informing decision making, and 6) regained control through decision-making processes. CONCLUSIONS:This is the first ethnographic account of decision making among patients with UIAs. Newly diagnosed patients explored treatment options using online forums. They faced ambiguity in identifying optimal management, creating apprehension and decisional conflict. Further research is required to improve risk communication and individualized decision making for patients with UIAs.