Complex lived experiences and hidden disability after spinal cord injury: a latent profile analysis of the Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey

Abstract

Purpose To identify and examine subgroups of people with spinal cord injury (SCI) with different patterns of lived experience, and examine hidden impairments and disability among functionally independent and ambulant people. Materials and methods Latent profile analysis of population-based data from the Australian arm of the International Spinal Cord Injury (InSCI) Community survey (n = 1579). Results Latent subgroups reflected levels of functional independence and extent of problems with health, activity/participation, environmental barriers, and self-efficacy. Quality of life (QoL), psychological profiles, and activity/participation were often as good or better in participants who reported lower (vs. higher) functional independence alongside comparable burden of health problems and environmental barriers. QoL, mental health, and vitality reflected self-efficacy and problem burdens more closely than functional independence. Ambulant participants reported a substantial burden of underlying, potentially hidden impairments, with QoL and mental health similar to wheelchair users. Conclusion Hidden disability among more independent and/or ambulant people with SCI can affect well-being substantially. Early and ongoing access to support, rehabilitation, and SCI specialist services is important irrespective of cause, type, severity of injury, and level of functional independence. Improved access to SCI expertise and equity of care would help to improve early recognition and management of hidden disability. Trial registration Not applicable.