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Attaining consensus on a core dataset for upper limb lymphoedema using the Delphi method: A foundational step in
Robyn Sierla1,2, Elizabeth Dylke1, Simon Poon1
1The University of Sydney, Australia.
Summary
This study established a core dataset for upper limb lymphoedema, standardizing how clinicians monitor and report swelling. This aims to improve data consistency and support digital health systems for better patient care.
Area of Science:
- Medical research
- Clinical data standardization
- Lymphedema management
Background:
- Lymphoedema involves localized swelling due to lymphatic system compromise, leading to tissue changes.
- Current assessment and reporting methods for lymphoedema lack standardization.
- Heterogeneity exists in assessed domains, outcomes, measurement protocols, and reporting descriptors.
Purpose of the Study:
- To achieve consensus on essential data items for a core dataset for upper limb lymphoedema.
- To facilitate the digitization of monitoring and reporting for upper limb lymphoedema.
- To establish a foundation for a clinical support system.
Main Methods:
- A modified Delphi study involving 70 experts was conducted in two online rounds.
- Experts refined a list of common outcomes and descriptors from prior research.
- Participants rated item importance and identified missing elements, then rated new items and data display preferences.
Main Results:
- A core dataset for upper limb lymphoedema was confirmed.
- Interlimb difference (percentage) and limb volume were preferred for longitudinal graphing.
- Descriptors for observed and palpated changes were reduced from 42 to 20.
Conclusions:
- The developed dataset provides a standardized foundation for upper limb lymphoedema assessment.
- This standardization is crucial for developing a clinical support system.
- Digitizing monitoring and reporting will enhance consistency and data quality.
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