Patient Experience Research

KEY FINDING: Barriers to SCI education emerged as a particularly strong theme in the literature; 5 specific challenges were consistently identified.

KEY FINDING: The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL).

KEY FINDING: We developed 14 unidimensional calibrated item banks and 3 calibrated scales across physical, emotional, and social health domains.

KEY FINDING: The final item banks demonstrated unidimensionality (Bladder Management Difficulties CFI = 0.965; RMSEA = 0.093; Bowel Management Difficulties CFI = 0.955; RMSEA = 0.078) and acceptable fit to a graded response IRT model.

KEY FINDING: The web-based intervention includes a unique interactive urinary diary, modified for mobile phone use, aiming to improve self-management skills among intermittent catheter users.

KEY FINDING: Language discordance negatively impacts the ability to establish treatment goals and educate patients about occupational therapy, leading to frustration and a lack of understanding of the importance of therapy.

KEY FINDING: Self-management in SCI involves both internal and external responsibilities.

KEY FINDING: The Health Mechanics intervention was perceived as useful and relevant in addressing a diverse range of health issues, but attrition rates and recruitment barriers suggested limitations in the acceptability of the in-person format.

KEY FINDING: Many people with spinal cord injuries and their family members don't know enough about AD. Specifically, 41% of the SCI sample had not even heard of it.

KEY FINDING: A taxonomy of nursing patient education efforts and care management was developed, consisting of 10 education and 3 care management categories.