Understanding and Preventing Loss to Follow-up: Experiences From the Spinal Cord Injury Model Systems

Top Spinal Cord Inj Rehabil, 2018 · DOI: 10.1310/sci2402-97 · Published: January 1, 2018

Spinal Cord Injury Research Methodology & Design

Simple Explanation

Longitudinal research faces challenges due to participants dropping out, which can bias the study results. To ensure the findings are widely applicable, it's important to understand what causes this attrition and focus on retaining those at high risk of not participating. This study examined factors linked to loss to follow-up (FU) among 25,871 individuals with spinal cord injury (SCI) in the National Spinal Cord Injury Database, defining loss to FU as the absence of research information from eligible participants. The study found that people who are marginalized in society are more likely to be lost to FU. These findings can help identify individuals less likely to participate in follow-up, allowing for targeted interventions to improve their response rate.

Study Duration

35 Years

Participants

25,871 people with spinal cord injury

Evidence Level

Not specified

Key Findings

1
Loss to FU rates were 23.1% at post-injury year 1 and 32.9% at year 5, exceeding 40% between years 20 and 35.
2
People at risk of being marginalized, including non-whites, those with less education, the unemployed, victims of violence, and those without health insurance, had the highest odds of being lost to FU across all post-injury years.
3
The study found that the FU rate varied by study sites and was improved in recent injury cohorts.

Research Summary

This study investigates factors associated with loss to follow-up (FU) in a large cohort of individuals with spinal cord injury (SCI) using data from the National Spinal Cord Injury Database. The research identifies demographic and clinical characteristics that predict which individuals are more likely to be lost to FU, such as being non-white, having less education, or being unemployed. The findings emphasize the importance of targeted interventions to improve participant retention, particularly for those at higher risk of being lost to FU, to ensure the validity and generalizability of longitudinal SCI research.

Practical Implications

Targeted Interventions

The study's findings can be used to identify individuals at high risk of loss to follow-up, allowing for targeted interventions to improve their response rate.

Improved Study Design

The study highlights the importance of incorporating strategies to maximize follow-up participation from initial enrollment in longitudinal studies.

Policy Implications

The study underscores the need to address socioeconomic disparities that contribute to loss to follow-up, ensuring equitable representation in research.

Study Limitations

1
The study findings may not be generalizable to all people with SCI in the United States, as participants were recruited from SCIMS centers, not a population-based sample.
2
Deaths and other technical reasons for non-participation were excluded, limiting the assessment of study attrition's complete picture and bias.
3
The study was not able to examine factors such as data collection practices, retention strategies, and interviewers’ skills due to NSCID design constraints.

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