Spinal Cord Injury – Quality of Life measurement system (SCI-QOL) and its subcomponent the Spinal Cord Injury – Functional Index (SCI-FI) assess 22 symptoms and functional impacts of physical, emotional, and social health for people with disabilities. These PROM systems have been developed with extensive input and feedback from individuals with SCI throughout the development process. In this session, we will describe the development and testing of the SCI-QOL measurement system and present results of new studies to work with patients, families, clinicians, and others to develop and validate SCI-QOL item banks, create guidelines for meaningful and actionable thresholds, map scores to common patient descriptors. We will present a novel method for developing actionable cut scores for several SCI-QOL item banks. Finally, this session will describe how PROMS have been incorporated into iManage-SCI, a novel and innovative eHealth symptom-monitoring and self-management system.
Learning Objectives:
To discuss a new spinal cord injury system of patient reported measurement scales covering physical functioning, emotional, social, and medical domains of functioning.
To describe innovative methods to develop clinically relevant scoring standards to provide clinical meaning to scores.
To explain the development of a e-health application that links self-assessment with self-management techniques
To discuss how new research is being conducted to measure sexual wellness and how these assessments can be utilized in an e-health application.
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