title: Patient-reported outcome measures for patients with cerebral aneurysms acquired via social media: data from a large nationwide sample.
abstract: BACKGROUND
  With greater survival rates, patient-reported outcome measures (PROMs) among survivors of ruptured cerebral aneurysm should be an increasing concern among neurointerventionalists. Prior studies were limited in scale and generalizability. Our study aims were to (1) evaluate the validity of cerebral aneurysm PROMs obtained from social media; (2) determine the persistence of PROMs over time; and (3) determine what PROMs still exist in those with no physical impairments.
  
  
  METHODS
  By engaging national brain aneurysm support groups and using an online questionnaire modeled after the generic EQ-5D instrument, we asked respondents to classify their health in five dimensions including mobility, self-care, usual activities, pain/discomfort, and anxiety/depression using a 3-point Likert scale.
  
  
  RESULTS
  In 2 months we received 604 responses from 46 states in the USA. Our cohort of ruptured aneurysm respondents reported PROMs similar to previously published series. Over time, headache and anxiety improved while depression, level of exercise, and return to work remained unchanged. We found that memory worsened after 2 years. Among those without any physical impairment, rates of 20.6%, 14.9%, 12.6%, and 23% were seen for significant headaches, significant memory loss, significant depression, and sense of life being negatively affected, respectively.
  
  
  CONCLUSIONS
  Despite this novel study design, we obtained results comparable to prior studies. These results suggest that many patients with ruptured cerebral aneurysms, regardless of whether they are >2 years after the event and/or free of physical impairment, struggle with a poor quality of life. The latency, scale, and low cost of this study design may accelerate future cerebral aneurysm PROM research.
authors.affiliation: Department of Neurological Surgery, Rush University Medical Center, Chicago, Illinois, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Chen
authors.affiliation: Department of Neurological Surgery, Rush University Medical Center, Chicago, Illinois, USA.
authors.forename: Erwin
authors.initials: E
authors.lastname: Mangubat
authors.affiliation: Department of Neurological Surgery, Rush University Medical Center, Chicago, Illinois, USA.
authors.forename: Bichun
authors.initials: B
authors.lastname: Ouyang
mesh_terms: D000328:Adult; D017542:Aneurysm, Ruptured / Q000628:therapy*; D005260:Female; D006801:Humans; D002532:Intracranial Aneurysm / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care / Q000379:methods*; D063868:Patient Outcome Assessment; D011594:Psychometrics / Q000295:instrumentation; D012657:Self-Help Groups; D061108:Social Media; D011795:Surveys and Questionnaires / Q000592:standards
keywords: Aneurysm; Statistics; Subarachnoid; Technology