Health-Related Quality of Life and Health Care Systems in People With Spinal Cord Injury: A Cross-Country Comparison From the Second InSCI Community Survey

Objective: People with spinal cord injury/disease (SCI/D) have high health care needs. Using data from the second International Spinal Cord Injury (InSCI) community survey, the objective of this study is to determine the performance of health care systems for people with SCI/D. Specifically, health utilities for people with SCI/D and the country's health care system performance relative to other countries with comparable economic profiles will be examined. Design: A cross-sectional, multinational, observational cohort study. Setting: Community setting with participants from 31 countries across 6 World Health Organization regions. Participants: Of the 15,051 participants completing the survey between May 2022 and October 2024, 72% were male with a median age of 54 years, 55% having an incomplete injury and 64% having paraplegia. Interventions: Not applicable. Main Outcome Measures: Health-related quality of life was assessed by reporting health utilities using the 5-level version of the EQ-5D, called the EQ-5D-5L. Sixteen health care system performance indicators for 5 domains were derived by mapping the InSCI community survey items to the Commonwealth Fund domains. Results: Health utility scores ranged from 0.75 for Finland, a high-income country, to -0.01 for Iran, an upper-middle income country. All 31 countries have strengths and areas for improvement across 16 indicators. High-income countries generally had higher health utility scores and better rankings for their health care system performance. However, the health care systems in many of the upper-middle and lower-middle-income countries performed well, and efficiently used limited resources. Conclusion: To optimize health and participation in the community, the health care system must be responsive and meet the needs for people living with SCI/D. Results from this study provide evidence on the link between health care policies, resources, and health outcomes for people with SCI, which can inform policy change.