title: Mismatch between investigator-determined and patient-reported independence after spinal cord injury: consequences for rehabilitation and trials.
abstract: OBJECTIVE
  This study investigated the course and relationship between investigator-determined and patient-reported level of independence within the first year after spinal cord injury (SCI). The authors examined variables that contributed to these scores.
  
  
  METHODS
  In this observational cohort study, 73 patients with traumatic SCI were evaluated at 1, 3, and 6 months (and 40 subjects at 1 to 12 months). The investigator-determined independence was quantified using the Spinal Cord Independence Measure (SCIM). The subjective, patient-reported independence was determined by asking how their general restrictions influenced everyday life activities. Several variables were used to explain these 2 scores.
  
  
  RESULTS
  The SCIM score was higher than the patient-reported independence and improved significantly more over time (up to about 70/100 at 12 months), whereas the perceived independence remained below 50/100. The correlations between the 2 measures were at most moderate (r(s) ≤ 0.51), but in general somewhat higher for subjects with tetraplegia. Age and muscle strength predicted the SCIM score well. No variable predicted the patient-reported level of independence.
  
  
  CONCLUSIONS
  Investigator-determined and patient-reported outcomes can differ considerably and evolve differently. A patient-reported outcome measure may not detect actual functional improvement. It is likely that changes in patient-reported outcomes are influenced by many factors in addition to those associated with functional recovery, including psychological factors.
authors.affiliation: Balgrist University Hospital, University of Zurich, Zurich, Switzerland. hubertus.vanhedel@kispi.uzh.ch
authors.forename: Hubertus J A
authors.initials: HJ
authors.lastname: van Hedel
authors.forename: Petra
authors.initials: P
authors.lastname: Dokladal
authors.forename: Sabina
authors.initials: S
authors.lastname: Hotz-Boendermaker
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015331:Cohort Studies; D059026:Diagnostic Self Evaluation; D005260:Female; D006801:Humans; D057187:Independent Living / Q000523:psychology; D008297:Male; D008875:Middle Aged; D010243:Paralysis / Q000523:psychology / Q000534:rehabilitation*; D016032:Randomized Controlled Trials as Topic / Q000379:methods / Q000523:psychology; D012649:Self Concept; D013119:Spinal Cord Injuries / Q000523:psychology / Q000534:rehabilitation*; D055815:Young Adult