Health-related quality of life in children and young adults with post-thrombotic syndrome: Results from a cross-sectional study

Objective: While post-thrombotic syndrome (PTS) is increasingly recognized in children with a history of deep vein thrombosis (DVT), its impact on the health-related quality of life (HRQoL) is unknown. Our objective was to evaluate the association between the PTS and HRQoL by surveying a cohort of patients treated at our institution for DVT. Materials/Methods: All unique pediatric patients (0-18 years) treated for a DVT at the Mayo Clinic during the 15-year period, 1995-2009 were identified. A previously validated PTS survey instrument and age appropriate Pediatric Quality of Life inventory, version 4 (PedsQL 4.0) were mailed to eligible patients. Linear regression models were fit to compare the HRQoL scores between PTS groups (none, mild, moderate/severe), after adjusting for the presence of potential covariates. Results: Of the 90 respondents, 65 (72%) reported signs and/or symptoms of PTS. Mean age (±SD) at DVT diagnosis and survey completion were 12.8 (±6.1) and 19.3 (±7.7) years, respectively. Self-report PedsQL 4.0 module was completed by 79 patients, and 34 guardians completed the parent-proxy module. Patients with moderate to severe PTS reported significantly worse total HRQoL score (mean±SD, 71.3±13.4) as compared to patients with mild PTS (84.8±14.2) and no PTS (83.4±14) (P=0.001). Conclusion: Moderate to severe PTS has a significant impact on self-reported HRQoL as measured using the generic PedsQL 4.0. Further research is warranted to develop a venous disease-specific quality of life measure for children with a history of DVT.