Developing Better Ways to Measure Symptoms and Function in People with Spinal Cord Injury

Quick, but meaningful tools to measure symptoms and function in people with spinal cord injury (SCI) are important to better our understanding of the challenges that people with SCI experience. Questionnaires intended for the general population often do not work for people who use mobility aids, such as wheel chairs. In addition, people with SCI experience symptoms specific to this condition, such as pressure ulcers or bowel and bladder problems.  National Institutes of Health funded a project to develop the Spinal Cord Injury Quality of life Measurement System (SCI-QOL). Sixty-five individuals living with a SCI and 42 clinicians participated in several small group discussions. Participants discussed topics that are important to individuals living with SCI and their treating clinicians. We learned that physical-medical health, emotional health, and social participation are important areas to measure and we used what we learned to come up with the questions for the SCI-QOL that were tested in a large group of people with SCI in the next stage of the project.  Findings from this project indicate that individuals living with SCI face several challenges that are unique to individuals with this injury and that affect their life in three main areas: physical-medical, emotional health, and social participation. This project informed the development of better measures of symptoms and function and this new knowledge will help researchers and doctors to better understand and treat challenges that people with SCI face.