Is the Level of Consent to a National Research Registry Associated With Patient Outcomes After Traumatic Spinal Cord Injury? A Population-Based Study From the Rick Hansen Spinal Cord Injury Registry.
Antoine Dionne, Jean-Marc Mac-Thiong, Heather A Hong and 15 others
PMID 38865689WHAT IT FOUND
After traumatic spinal cord injury, people who gave only minimal registry consent or withdrew consent were more likely to stay longer in acute care, develop pressure injuries, and be discharged away from home.
This is an association, not proof consent caused worse care.
Key findings
01Of 2,811 individuals, 2,101 (74.7%) gave full consent, 553 (19.6%) gave minimal consent or withdrew, and 157 (5.6%) declined all consent.
02After adjustment, minimal consent or withdrawal was associated with longer acute stay (P=0.0012), higher odds of acute pressure injury (OR=1.56; P=0.036), and lower odds of home discharge (OR=0.45; P<0.001).
03There were no differences in ICU stay, rehabilitation stay, or in-hospital mortality, and adjusted analysis found no association with pneumonia.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The study is observational, so it shows association, not that consent caused worse outcomes. People who declined all consent (157) had no data and were not analysed, so the most disengaged group was not compared with the full-consent group. The minimal-consent group combined people who declined community follow-up and people who later withdrew consent, so these subgroups may differ. The minimal-consent group lived significantly further from the follow-up hospital, which may be linked to access, transfer, or other unmeasured factors. Only in-hospital mortality was analysed, not 1-year mortality, so mortality findings may differ from earlier work. Administrative factors such as delayed transfers to rehabilitation were not considered and may confound acute length of stay.
Declared interests
The authors reported no conflicts of interest by the authors or by any individuals in control of the content.
The easy way to misread this
Do not conclude that asking patients to consent to registry follow-up improves outcomes. This observational study only found an association, and it did not analyse people who declined all consent, so worse outcomes may reflect differences in injury severity, access, engagement, or other unmeasured factors.