Preferences of adults with spinal cord injury for widely used health-related quality of life and subjective well-being measures

The Journal of Spinal Cord Medicine, 2019 · DOI: 10.1080/10790268.2018.1474691 · Published: May 1, 2019

Spinal Cord Injury Participation Patient Experience

Simple Explanation

This study explores how adults with spinal cord injuries (SCI) feel about different questionnaires that measure their health-related quality of life (HRQOL) and overall well-being. The researchers wanted to know which aspects of these questionnaires were most important to people with SCI, and whether there were any differences in opinion between individuals in the United States and the United Kingdom. Understanding these preferences can help doctors and therapists choose the most useful questionnaires to better understand and address the needs of individuals living with SCI.

Study Duration

April and June 2016

Participants

20 adults with SCI (10 in the US and 10 in the UK)

Evidence Level

Not specified

Key Findings

1
Participants in both the US and the UK identified the Fatigue Severity Scale (FSS) as particularly important for their medical providers to know about.
2
The Spinal Cord Injury Independence Measure III and a single question about Eudaimonic Well-Being were also highly valued by participants.
3
The KWIC analysis showed that the most distinctive words used to discuss FSS were “fatigue” and “pain.”

Research Summary

This study examined preferences of adults with spinal cord injury for widely used HRQOL and SWB instruments in two small samples in the US (N = 10) and the UK (N = 10). The participants who rated surveys as vital were primarily those with incomplete injuries. This may be explained by the fact that the persons with incomplete spinal injuries tended to experience higher levels of pain and fatigue. In this study, we found that participants in both samples identified the FSS as “vital” in terms of importance of informing medical providers about what it measures.

Practical Implications

Informed Instrument Selection

Clinicians can use the findings to select HRQOL and SWB measures that are most valued by adults with SCI.

Tailored Care

Understanding patient preferences can help tailor care and rehabilitation protocols to individual needs.

Fatigue Management

The importance of fatigue identified by participants suggests a need for further investigation and management of fatigue in adults with SCI.

Study Limitations

1
Small sample size and unknown representativeness limit generalizability.
2
Statistically significant differences between countries on age at injury, time since injury, and post-acute rehabilitation time.
3
Self-selection and access to technology may bias the sample.

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