The unmet burden of secondary SCI complications: lost in translation

Résumé fourni par la source

Spinal cord injury (SCI) carries one of the highest disability weights among conditions tracked in the WHO's Global Burden of Disease framework, yet federal research investment remains skewed toward locomotor restoration rather than the secondary complications-bowel and bladder dysfunction, autonomic dysreflexia, pressure injuries, and neuropathic pain-that people with chronic SCI consistently identify as their greatest daily burden. Drawing on patient perspectives, a systematic funding analysis, and two decades of survey data, this piece shows that SCI receives approximately 0.2% of NIH funding against roughly 1% of U.S. disease burden, and that within SCI research itself, movement/mobility studies (2017-2023) drew nearly twice the funding allocated to pain, bladder, bowel, and pressure-injury research combined. This misalignment persists despite a 2004 survey establishing that the functional priorities of people living with SCI diverge sharply from prevailing research goals. Secondary complications are argued to warrant treatment as primary research targets rather than downstream concerns, alongside compounding structural barriers: a shortage of trained SCI physiatrists, underpowered and poorly reproducible preclinical models, and inconsistent translation of lived-experience data into funding decisions. Researchers, clinicians, and advocates are called upon to realign scientific priorities, clinical training, and policy with the actual burden of chronic SCI, closing a gap that has persisted largely unaddressed for over twenty years.

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