Health Information for Persons With Spinal Cord Injury

The Patient Activation Measure (PAM-13) assesses four levels of activation: (1) the patient is disengaged and overwhelmed, (2) the patient is becoming aware but still struggling, (3) the patient takes action, and (4) the patient maintains behaviors. The psychometric properties of the PAM-13 have been assessed in multiple healthcare settings. Raw PAM-13 scores can be transformed into a continuous (0-100) scale, where higher score represent higher levels of patient activation. In order to target self-management strategies, participants will proceed through these levels.

The Self-Care in Spinal Cord Injuries Inventory and Self-Care Self-Efficacy Scale in Spinal Cord Injuries are valid and reliable instruments designed to assess self-care behaviors in individuals with spinal cord injuries. There are four self-care dimensions: self-care maintenance, self-care monitoring, self-care management and self-care self-efficacy.

Scoring uses a 5-point rating scale. Higher scores show better self-care.

The SCI-QOL is designed as a multifaceted system for measuring patient reported outcomes across a wide variety of functioning. The SCI-QOL consists of a core set of PROMIS/Neuro-QOL items that have been optimized for people with SCI. The Pain Interference (10-item), Positive Affect and Well-being (10-item), Anxiety (9-item), Resilience (8-item), Bladder Management Difficulties (8-item), Bowel Management Difficulties (9-item), and Pressure Ulcers (7-item) item banks will be the components used in this study. Each item bank is calibrated to a mean score of 50 with a standard deviation of 10, indicating normal functioning. Higher scores on the SCI-QOL reflect greater levels of the constructs being measured.

The PROMIS item bank for emotional distress - depression is a self-report measure designed to assess the extent to which patients experience depressive symptoms over the past 7 days using a 5-point Likert scale from "never (1) to "always" (5). It consists of 8 items that evaluate symptoms such as feelings of worthlessness, hopelessness, and loss of interest in activities. PROMIS instruments are scored using item-level calibrations. PROMIS uses a T-score metric in which 50 is the mean of a relevant reference population and 10 is the standard deviation (SD) of that population. A higher PROMIS T-score represents more of the concept being measured.