Development of Interview and Online Self-Report Versions of Motor and Sensory Components of a Neurological Exam for Classifying Spinal Cord Injury (One-SCI).

Objective: To develop a patient-reported outcome (PRO) survey measure of the motor, sensory, and anorectal components needed for classifying spinal cord injury (SCI) according to the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI).

Design: Questionnaire development through an iterative process of review, feedback provision, and consensus revision incorporating 2 rounds of cognitive interviewing (CI).

Setting: Community.

Participants: Individuals with SCI (N=34) who were English-speaking and aged ≥18 years were recruited nationally through social media and advertisements to complete CI. Purposive sampling was used to ensure participants with complete and incomplete injuries in 6 cohorts based upon neurological level of injury (C1-4, C5-6, C7-T1, T2-T6, T7-T12, and L1-S5) were enrolled.

Interventions: Not applicable.

Main Outcome Measures: Online Neurological Exam for Spinal Cord Injury (One-SCI).

Results: A group of SCI clinicians, a graphic artist, ISNCSCI experts, researchers with expertise in questionnaire development, cognitive interviewing, and statistics, and a person with SCI who has lived experience with SCI developed the initial One-SCI questionnaire. A CI script with predetermined verbal probing questions was developed, designed to assess language appropriateness, vocabulary, concept simplicity, grammar, question structure, visual aids, emotional and mental burden both in the instructions and in the questions and available responses. Participants completed an online or interview version of the survey during 2 rounds of CI. After each round, changes were made to the instructions, questions, responses, and graphics. The final survey has a minimum of 154 and a maximum of 210 items, depending on branching logic driven by previous answers.

Conclusions: One-SCI allows online or interviewer-administered self-report documentation of the motor and sensory components of a neurologic examination for classifying SCI. Developed using an in-depth CI process, it may allow remote assessments of the elements required by an individual trained to interpret ISNCSCI examination findings to determine neurological status and classify SCI when an in-person ISNCSCI examination is not obtainable.