Patient education for individuals diagnosed with von Willebrand disease (VWD) should focus on understanding the nature of their bleeding disorder, recognising bleeding symptoms, and knowing how to manage and prevent bleeding episodes. Patients should be informed that VWD is a lifelong inherited condition affecting blood clotting due to deficient or defective von Willebrand factor, which increases bleeding risk NICE CKS Nichols et al. 2008.
Education should emphasise the importance of avoiding medications that exacerbate bleeding, such as nonsteroidal anti-inflammatory drugs (NSAIDs) and aspirin, unless specifically advised by their healthcare provider NICE CKS. Patients should also be taught to inform all healthcare professionals, including dentists and surgeons, about their diagnosis before any invasive procedures to ensure appropriate haemostatic measures are taken NICE CKS Nichols et al. 2008.
Patients need to recognise early signs of bleeding, including frequent nosebleeds, easy bruising, prolonged bleeding from cuts, heavy menstrual bleeding, or bleeding after surgery or dental work, and seek prompt medical advice if these occur NICE CKS. They should be educated on the use of desmopressin (DDAVP) or clotting factor concentrates as prescribed, including when and how these treatments are administered, and the importance of adherence to treatment plans NICE CKS Nichols et al. 2008.
Women with VWD should receive specific counselling regarding menorrhagia and pregnancy-related bleeding risks, with plans for multidisciplinary care during pregnancy and delivery to minimise bleeding complications NICE CKS Nichols et al. 2008Rathore et al. 2013.
Patients should be encouraged to maintain a medical alert card or bracelet indicating their diagnosis to facilitate emergency care NICE CKS. Lifestyle advice includes avoiding contact sports or activities with high bleeding risk unless adequately protected and maintaining good dental hygiene to reduce gum bleeding NICE CKS.
Recent literature highlights the importance of individualised management plans, especially when patients require interventions such as percutaneous coronary procedures, where bleeding risk must be balanced with thrombosis prevention, underscoring the need for close specialist collaboration Rathore et al. 2013.
Key References
- CKS - Deep vein thrombosis
- CKS - Anticoagulation - oral
- CKS - Varicose veins
- CKS - Leg ulcer - venous
- NG158 - Venous thromboembolic diseases: diagnosis, management and thrombophilia testing
- CG141 - Acute upper gastrointestinal bleeding in over 16s: management
- NG121 - Intrapartum care for women with existing medical conditions or obstetric complications and their babies
- NG24 - Blood transfusion
- (Nichols et al., 2008): von Willebrand disease (VWD): evidence-based diagnosis and management guidelines, the National Heart, Lung, and Blood Institute (NHLBI) Expert Panel report (USA).
- (Rathore et al., 2013): Percutaneous coronary intervention and the management of acute coronary syndromes in patients with von Willebrand disease.