Determining paralysis prevalence in the United States

Background: Estimates of paralysis vary widely, largely owing to a lack of standard definition and nontargeted survey approaches. Like other poorly understood conditions such as fibromyalgia, chronic fatigue, or chronic pain, paralysis falls outside the scope of clearly defined medical diagnosis, further complicating surveillance efforts. This inability to identify accurate prevalence makes developing policy interventions around the needs of many persons with these disabilities problematic. The objectives were to investigate how paralysis is being measured in the United States and to examine the validity of prevalence estimates based on current approaches. Methods: We reviewed existing measurement instruments and surveyed 139 agencies and organizations to determine how they capture paralysis data. Results: There is a widespread reliance on ICD coding or broad functional capabilities for most state or federal agencies. Many organizations serving consumers depend on state registries for discrete conditions in which paralysis is not directly measured. Conclusions: Improved paralysis prevalence data will benefit from a more functional definition consistent with ICF guidelines, which can be part of future surveillance efforts at state and federal levels.