The development of lived experience-centered word clouds to support research uncertainty gathering in degenerative cervical myelopathy: results from an engagement process and protocol for their evaluation, via a nested randomized controlled trial

Trials, 2021 · DOI: https://doi.org/10.1186/s13063-021-05349-8 · Published: June 1, 2021

Patient Experience Spinal Disorders Research Methodology & Design

Simple Explanation

This study describes how word clouds were created using input from people with degenerative cervical myelopathy (DCM). The word clouds are for diagnosis, treatment, long-term management, and other aspects of DCM. These word clouds will be used in a survey to see if they help generate new research questions about DCM. The study will evaluate if using word clouds stimulates more creative research ideas from survey respondents. The study aims to improve how research priorities are set in DCM by including the experiences of those living with the condition.

Study Duration

2 weeks for each polling phase

Participants

Members of Myelopathy Support online group

Evidence Level

Not specified

Key Findings

1
The study found that it is possible to work with individuals with DCM to create word clouds for the AO Spine RECODE-DCM study.
2
The word clouds highlighted key themes such as prominent symptoms, the importance of MRI for diagnosis, surgical decompression as the gold standard treatment, and the impact of disability and tiredness.
3
A 1:1 block randomization protocol was generated to assess the word cloud impact on the number and relevance of PSP research questions.

Research Summary

The study describes the development of word clouds based on the lived experiences of individuals with DCM, covering diagnosis, treatment, long-term management, and other aspects. These word clouds are intended to be used within the AO Spine RECODE-DCM project to assess their impact on stimulating a more creative research agenda. The study highlights the importance of including the perspective of people with DCM in setting research priorities and aims to evaluate whether word clouds can facilitate this process.

Practical Implications

Improved Research Prioritization

Using word clouds can potentially help researchers and healthcare professionals better understand the priorities and concerns of individuals with DCM, leading to more relevant and impactful research.

Enhanced Patient Engagement

The study demonstrates a method for effectively engaging patients in the research process, which can lead to research that is more patient-centered and addresses their needs.

Stimulation of Creative Research

The use of word clouds may stimulate more creative research questions by providing a visual representation of the key issues and experiences of people with DCM.

Study Limitations

1
The sample was an internet-recruited, convenience sample of persons with DCM, so generalization of these word clouds, in the absence of demographics, cannot be fully evaluated.
2
Whether a two-stage development process was required is unclear.
3
The study acknowledges that the impact of the relative size of a word or its relative competition (the number of other words in the cloud) will also be evaluated.

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