Upper extremity post-thrombotic syndrome score: consensus results from an international Delphi study

Background There is no gold standard to diagnose or classify upper extremity post-thrombotic syndrome (UE-PTS). Recently, 2 Delphi consensus studies were conducted to develop a score for diagnosing and classifying UE-PTS. Objectives The aim of the present study was to gain expert consensus on the definitions of the individual components of the UE-PTS score to enable the consistent application of this score. Methods The Delphi approach was chosen as the appropriate method to gain expert consensus, and 53 experts were invited to participate. Definitions were collaboratively developed by a Delphi Steering Committee together with UE-PTS patients. Experts were asked to provide feedback and rated the proposed definitions across 3 Delphi rounds using a 9-point Likert scale, with consensus defined as ≥75% of scores ≥7. Results Thirty-five of the 53 (66%) experts agreed to participate in this Delphi study. The expert panel included vascular surgeons, internists, hematologists, and physical therapists. In round 1, 45 alternative definitions or comments were collected. In round 2, no consensus was reached for any statement. In round 3, consensus was reached for all statements, with the highest level of consensus being 96% for the symptoms: heavy feeling of the arm, fatigue when using arm, and pain (chronic or during specific exercises). Conclusion Consensus was reached on the optimal definitions of 5 symptoms and 2 clinical signs of the UE-PTS score. The next step is to validate and finalize the UE-PTS score in a patient cohort before it can be implemented in future research and clinical practice.