title: Surrogate decision makers' attitudes towards research decision making for critically ill patients.
abstract: OBJECTIVE
  To examine the attitudes and preferences of surrogate decision makers (SDMs) regarding their involvement in the consent to research process for ICU patients.
  
  
  METHODS
  We presented 136 SDMs of critically ill patients in five ICUs with four hypothetical research scenarios: baseline interventional study of a placebo controlled RCT; study with higher risk of treatment complication; study comparing two accepted treatments; study with shorter enrolment window. For each we asked SDMs if they would want to be involved in the consent to research decision, and to rate the acceptability of their comfort with, and their sense of burden with their involvement. Participants were screened for symptoms of anxiety and depression using the Hospital Anxiety and Depression Scale.
  
  
  RESULTS
  For the baseline scenario, most SDMs wished to be involved in research decision making (90 %; 95 % CI 84-95 %); responses varied little across study permutations. The majority considered their involvement to be acceptable (85 %; 95 % CI 77-90 %), whereas, a small minority rated it as being unacceptable (2 %; 95 % CI 1-6 %). Many were comfortable with being involved (50 %; 95 % CI 41-59 %), but the number decreased when risk of harm was higher (34 %; 95 % CI 26-43 %) or enrolment window was shorter (41 %; 95 % CI 33-50 %). A majority (62 %) reported symptoms of anxiety and many (38 %) had symptoms of depression.
  
  
  CONCLUSIONS
  Most of the interviewed SDMs wished to be involved in research decision making for critically ill and incapable loved ones. Variability existed, however, in their desire to be involved when decisions were time-sensitive or perceived risk was greater.
authors: Internal Medicine Programme, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
authors: Kali A
authors: KA
authors: Barrett
authors: Niall D
authors: ND
authors: Ferguson
authors: Valerie
authors: V
authors: Athaide
authors: Deborah J
authors: DJ
authors: Cook
authors: Jan O
authors: JO
authors: Friedrich
authors: Ellen
authors: E
authors: McDonald
authors: Ruxandra
authors: R
authors: Pinto
authors: Orla M
authors: OM
authors: Smith
authors: James
authors: J
authors: Stevenson
authors: Damon C
authors: DC
authors: Scales
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D002648:Child; D002675:Child, Preschool; D003422:Critical Care / Q000379:methods*; D016638:Critical Illness / Q000628:therapy*; D003657:Decision Making; D005260:Female; D006801:Humans; D007258:Informed Consent; D007362:Intensive Care Units; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D055815:Young Adult