Patient-reported outcomes after upper-extremity deep vein thrombosis due to compression syndromes: A multinational longitudinal retrospective study

Introduction Upper extremity deep vein thrombosis (UEDVT) is typically caused by local triggers, such as central venous lines and active cancer. In 10-20% of cases, however, UEDVT affects younger, active individuals after strenuous upper limb activity [ 1 ]. Anticoagulation is the mainstay of treatment. A significant residual compression at the level of the thoracic outlet syndrome may cause residual symptoms and thrombosis recurrence [ 2 ] [ 3 ]. In selected patients, endovascular reperfusion and first rib resection are considered [ 4 ] [ 5 ], though data remain limited. Most studies focus on radiological outcomes such as venous patency or reintervention. However, these do not capture the functional and psychosocial burden experienced by patients. In contrast to lower-limb DVT, for which validated patient-reported outcome measures and post-thrombotic syndrome scores exist, no widely accepted tools or standardized outcomes have been developed for UEDVT. This retrospective, longitudinal, multicenter, multinational study aimed to fill this gap by evaluating patient-reported outcomes in patients with history of UEDVT using standardized tools including the QuickDASH and a Quality of Life (QoL) scale. Method We did a retrospective multicenter cohort study of patients with confirmed UEDVT due to compression syndromes and not related to central lines from five centers in four countries. Patients completed a standardized patient-reported outcome survey. The primary outcome was upper-limb function measured via the QuickDASH score (range: 0-100; higher scores indicate worse function). Quality of life was assessed using a visual analogue scale. Additional endpoints included persistent symptoms, treatment satisfaction, mental health impact, and unmet needs. Results We included 82 patients (median age 38 years; Q1-Q3:26-48), 44% were women; [ Fig. 4 ]. All patients received anticoagulation and 66% underwent catheter-directed therapy. After a median follow-up of 16 months, 63% reported≥1 persistent symptom, most commonly swelling (30%) and heaviness (29%); [ Fig. 5 ]. The median QuickDASH score was 8 (Q1-Q3: 2-20), indicating mild overall disability; [ Figure 1 ] [ 2 ]. QuickDASH correlated negatively with quality of life (Spearman ρ=-0.82, p