Post‐thrombotic syndrome after upper extremity deep vein thrombosis: An international Delphi consensus study

OBJECTIVES: Primary deep vein thrombosis of the upper extremity (UEDVT) is a rare condition but up to 60% of patients may develop post‐thrombotic syndrome in the upper extremity (UE‐PTS) with significant morbidity and decreased quality of life. However, there is no universally accepted method to diagnose and classify UE‐PTS, hampering scientific research on UEDVT treatment. Through this international Delphi consensus study we aimed to determine what a clinical score for diagnosing UE‐PTS should entail. METHODS: An online focus group survey among 20 patients treated for UEDVT was performed to provide clinical parameters before the start of a four round electronic Delphi consensus study among 25 international experts. The CREDES recommendations on Conducting and Reporting Delphi Studies were applied. Open text questions, multiple selection questions, and 9‐point Likert scales were used. Consensus was set at 70% agreement. RESULTS: After four rounds, agreement was reached on a composite score of five symptoms and three clinical signs, combined with a functional disability score. The signs and symptom will each be scored on a severity scale of 0–3 and the total score expressed as an ordinal variable; no/mild/moderate/or severe PTS. The functional disability portion measures the impact of the signs and symptoms on the functionality of the patient’s arm. CONCLUSION: Consensus was reached on a composite score of signs and symptoms of UE‐PTS combined with a functional disability score. Clinical validation of the UE‐PTS score in a large patient cohort is mandatory to facilitate application in future research.