Von Willebrand disease. Coordination between levels of healthcare

Abstract

Introduction: Von Willebrand disease (VWD), the most common congenital bleeding disorder, requires coordinated care between primary care and coagulation referral unit to ensure proper diagnosis and safe pharmacotherapeutic management in these patients. Objective: to study the concordance between primary care and specialised care records, and to correct the discrepancies found.

Method: A two-phase study was performed. Phase 1: review of diagnostic and treatment records for patients with VWD registered on September 1, 2023 in a coagulation unit. Diagnoeis, prescription of bleeding-risk drugs, and history of bleeding in Primary Care setting were analysed. Phase 2 (October 2023–October 2024): primary care was contacted to correct inaccurate information and adjust treatments. 

Results: A total of 106 patients (59% female, mean age 37.6 years) were included. A diagnosis of VWD was recorded in PC in 64.2%, vague diagnoses in 15.1% and 20.7% were not recorded. Eight patients (7.55%) were prescribed non-selective NSAIDs (three with no recorded diagnosis in Primary Care). After intervention by telephone or e-mail, discrepancies were reduced by 32.7% (from 35.8% to 3.1%), but the lack of a two-way telematic and protocolised communication system between care levels prevented reaching 0%.

Conclusions: Improved communication between levels of care reduced discrepancies, but systems need to be put in place to overcome organisational and logistical barriers to communication between professionals in the interest of patient safety.