Patient-reported outcomes after upper-extremity deep vein thrombosis due to compression syndromes: a multinational...

There are limited data on functional and patient-reported outcomes after acute upper-extremity deep vein thrombosis (UEDVT) caused by compression syndromes.

This study examined patient-reported functional impairment, quality of life, and treatment satisfaction after UEDVT.

We did a retrospective multicenter cohort study of patients with confirmed UEDVT due to compression syndromes not related to central lines. Patients were included at 5 centers in 4 countries and completed a standardized patient-reported outcome survey. The primary outcome was upper-limb function measured via the Quick Disabilities of the Arm, Shoulder, and Hand (QuickDASH) score (range, 0-100; higher scores indicate worse function) during follow-up. Quality of life was assessed using a Visual Analogue Scale. Additional outcomes included persistent symptoms, treatment satisfaction, mental health impact, and perception of unmet needs.

We included 82 patients (median age, 38 years; Q1-Q3, 26-48 years); 44% were women. All patients received anticoagulation, and 66% underwent catheter-directed therapy. First-rib resection was performed in 24% of patients. After a median follow-up of 16 months, 63% reported ≥1 persistent symptom, most commonly swelling (30%) and heaviness (29%). The median QuickDASH score was 8 (Q1-Q3, 2-20), indicating mild overall disability. QuickDASH correlated negatively with quality of life (Spearman ρ = -0.82; P < .001) and across QuickDASH items and countries. Symptom persistence emerged as the main predictor of residual functional impairment. Patient-reported priorities included maintaining adequate arm function (78%) and avoiding recurrent UEDVT (73%).

UEDVT can have lasting functional and psychosocial effects. Patient-reported outcomes reveal a burden that is not captured by traditional clinical metrics and should be integrated into routine care as well in the setting of interventional trials.