Developing a Contemporary Patient Reported Outcomes Measure for Spinal Cord Injury

Arch Phys Med Rehabil, 2011 · DOI: 10.1016/j.apmr.2011.04.024 · Published: October 1, 2011

Spinal Cord Injury Participation Research Methodology & Design

Simple Explanation

This study addresses the need for a specific tool to measure the quality of life (QOL) for individuals with Spinal Cord Injury (SCI). Existing measures are often generic and may not capture relevant issues. The research involves focus groups with SCI patients and clinicians to identify important aspects of QOL, covering physical, emotional, and social health. The aim is to develop the SCI-QOL, a patient-reported outcome (PRO) measure that is comprehensive, sensitive, and relevant across a wide range of neurological functions, using advanced psychometric techniques.

Study Duration

Not specified

Participants

62 individuals with SCI and 42 clinicians

Evidence Level

Not specified

Key Findings

1
Qualitative analysis highlighted three key domains: physical-medical health, emotional health, and social participation, informing the development of the SCI-QOL.
2
The study identified specific subdomains within emotional health (grief/loss, resilience, self-esteem/awareness) more salient to SCI patients than general measures like anxiety and depression.
3
Environmental factors significantly impact social participation, with accessibility, community services, and societal attitudes acting as barriers or facilitators for individuals with SCI.

Research Summary

The study aimed to develop a comprehensive and specific PRO measure for SCI, addressing the limitations of existing generic or narrowly focused tools. Focus groups with SCI patients and clinicians revealed key domains and subdomains influencing QOL, including physical-medical health, emotional health (with emphasis on resilience and grief), and social participation. The findings informed the development of the SCI-QOL, utilizing advanced psychometric techniques to create item banks that are relevant across a wide range of neurological functions.

Practical Implications

Improved QOL Assessment

The SCI-QOL provides a more accurate and relevant tool for assessing QOL in SCI clinical trials and research.

Targeted Interventions

Identifying key domains like resilience and grief can inform targeted interventions to improve emotional well-being for individuals with SCI.

Policy and Environmental Changes

Highlighting environmental factors underscores the need for policy changes and accessible environments to promote social participation for individuals with SCI.

Study Limitations

1
Focus group methodology may introduce biases due to group dynamics and limited generalizability of the sample.
2
Subjectivity in the evaluation and coding of qualitative responses.
3
Not specified

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