title: Web-Based Assessment of Outcomes After Subarachnoid and Intracerebral Hemorrhage: A New Patient Centered Option for Outcomes Assessment.
abstract: BACKGROUND
  Clinical outcomes are typically assessed by trained staff. We tested the hypothesis that outcomes reported by the patient or a caregiver on the web would be correlated with a validated interview.
  
  
  METHODS
  We assessed surviving patients with intracerebral and subarachnoid hemorrhage at 1- , 3- , and 12-month follow-up with a validated interview for the modified Rankin Scale (mRS, a validated ordinal scale from 0, no symptoms to 5, severe disability). Health-related quality of life (HRQoL) was assessed on the web with NIH Patient-Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL using computer adaptive testing by the patient, proxy reporting by a caregiver, or proxy entry by study staff.
  
  
  RESULTS
  A coincident mRS and HRQoL assessment was available for 149 (71 %) of 209 patients at one, three, or 12 months. There were 89 assessments with proxy entry by study staff, 89 by the patient on the web, and 58 with proxy report by a caregiver on the web. PROMIS physical function assessments were completed in median of 4 questions, and T scores were associated with the mRS (P < 0.001), regardless of respondent. Mean T scores in every category of the mRS were different from every other category (P ≤ 0.003 for all). Results were similar for Neuro-QOL mobility.
  
  
  CONCLUSIONS
  Web-based HRQoL assessment with NIH PROMIS and Neuro-QOL is feasible and correlated with a validated interview for the mRS. T scores distinguished between individual categories of the mRS, detecting modest differences in physical function and mobility HRQoL that are difficult to detect with the mRS. PROMIS and Neuro-QOL provide powerful and sensitive outcomes for potentially large cohorts.
authors.affiliation: Department of Neurology, Northwestern University, 710 N Lake Shore Drive 11th floor, Chicago, 60611, USA, a-naidech@northwestern.edu.
authors.forename: Andrew M
authors.initials: AM
authors.lastname: Naidech
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Beaumont
authors.forename: Michael
authors.initials: M
authors.lastname: Berman
authors.forename: Eric
authors.initials: E
authors.lastname: Liotta
authors.forename: Matthew B
authors.initials: MB
authors.lastname: Maas
authors.forename: Shyam
authors.initials: S
authors.lastname: Prabhakaran
authors.forename: Konrad
authors.initials: K
authors.lastname: Kording
authors.forename: Jane
authors.initials: J
authors.lastname: Holl
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000328:Adult; D000368:Aged; D002543:Cerebral Hemorrhage / Q000628:therapy*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care / Q000379:methods*; D063868:Patient Outcome Assessment; D011788:Quality of Life; D013345:Subarachnoid Hemorrhage / Q000628:therapy*