Attaining consensus on a core dataset for upper limb lymphoedema using the Delphi method: A foundational step in creating a clinical support system

Abstract

Background: Lymphoedema is a condition of localised swelling caused by a compromised lymphatic system. The protein-rich fluid accumulating in the interstitial tissue can create inflammation and irreversible changes to the skin and underlying tissue. An array of methods has been used to assess and report these changes. Heterogeneity is evident in the clinic and in the literature for the domains assessed, outcomes and outcome measures selected, measurement protocols followed, methods of analysis, and descriptors used to report change. Objective: This study seeks consensus on the required items for inclusion in a core data set for upper limb lymphoedema to digitise the monitoring and reporting of upper limb lymphoedema. Methods: The breadth of outcomes and descriptors in common use were captured in prior studies by this research group. This list was refined by frequency and proposed to experts in the field ( n = 70) through a two-round online modified Delphi study. These participants rated the importance of each item for inclusion in the dataset and identified outcomes or descriptors they felt were missing in Round 1. In Round 2, participants rated any new outcomes or descriptors proposed and preference for how numeric data is displayed. Results: The core dataset was confirmed on completion of Round 2. Interlimb difference as a percentage, and limb volume were preferred for graphed display over time; and descriptors for observed and palpated change narrowed from 42 to 20. Conclusion: This dataset provides the foundation to create a clinical support system for upper limb lymphoedema.