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

van Hedel HJ,Dokladal P,Hotz-Boendermaker S,EM-SCI Study Group.

doi

10.1177/1545968311407518

subject

Has Abstract

pub_date

2011-11-01 00:00:00

pages

855-64

issue

9

eissn

1545-9683

issn

1552-6844

pii

1545968311407518

journal_volume

25

pub_type

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