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

TL;DR

This study finds that upper-extremity deep vein thrombosis can lead to lasting symptoms and reduced quality of life in patients, even after treatment.

Contribution

The study provides new insights into patient-reported outcomes following UEDVT due to compression syndromes, highlighting symptom persistence and its impact on quality of life.

Findings

Nearly two-thirds of patients reported persistent symptoms like swelling and heaviness after UEDVT.

UEDVT was linked to mild disability in upper-limb function and reduced quality of life.

Persistent symptoms were the main predictor of residual functional impairment.

Abstract

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.

•Upper-extremity deep vein thrombosis (UEDVT) affects healthy, active patients.•Patients from 5 hospitals in 4 countries completed a standardized outcomes survey.•Nearly two-thirds had lasting arm symptoms, mainly swelling and heaviness.•Ongoing symptoms were linked to worse arm function and quality of life.

Upper-extremity deep vein thrombosis (UEDVT) affects healthy, active patients.

Patients from 5 hospitals in 4 countries completed a standardized outcomes survey.

Nearly two-thirds had lasting arm symptoms, mainly swelling and heaviness.

Ongoing symptoms were linked to worse arm function and quality of life.

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