Liesbeth Helene Schrijvers

University Medical Center Utrecht | UMC Utrecht · Department of Hematology

Purpose Adolescents and young adults (AYAs) with severe hemophilia use prophylaxis that requires a high level of adherence. The present study aimed to explore the underlying reason for adherence and non-adherence to prophylaxis in hemophilia from the perspective of AYAs. Patients and Methods A qualitative study in Dutch AYAs with hemophilia (14–25...

Prevention of bleeding and joint damage in severe haemophilia is dependent on adherence to prophylactic replacement therapy. The aim of this study was to assess adherence to prophylaxis, including associations with age, bleeding and clotting factor consumption (CFC). In three Dutch haemophilia centres, semi-structured interviews about adherence to...

Introduction: Throughout life, a patient with severe haemophilia is confronted with many treatment-related challenges. Insight into self-management and non-adherence could improve the quality of care for these patients. The aim of this study was to provide an overview of the current evidence on self-management and adherence to prophylaxis in haemo...

Prophylactic replacement therapy is the cornerstone of treatment in severe haemophilia. Regular infusions with clotting factor concentrate have been proven effective to prevent bleeding, subsequent (joint) damage, and positively affect the impact of haemophilia on daily life [1]. Patients or parents of younger patients learn to infuse clotting fact...

Objective: Adolescents with a chronic disorder, such as haemophilia, need to attain responsibility for their disease. The aim was to gain insight into how adolescents achieve self-management of prophylactic treatment. Methods: In three Dutch Haemophilia Treatment Centres, adolescents (10-25 years) received structured questions on treatment respo...

IntroductionCurrently, there is no consensus on education required to develop haemophilia nursing. The aim was to develop a curriculum for haemophilia nurses that could be used as a resource in Europe. This could form a basis for continuous professional development and used in the preparation of specialized educational programmes.Methods The EAHAD...

Given the lifelong therapy in haemophilia patients, insight in non-adherence behaviour from a patient perspective is important to understand patients' difficulties with the following treatment recommendations. The aim of this study was to clarify the process underlying adherence (behaviour) to prophylactic treatment, from a patients' perspective. T...

An adequate use of coping strategies could help patients to deal with disease-related stress. The study aim was to explore coping behaviour in adult patients with severe haemophilia and its possible determinants. Coping was assessed through three basic dimensions (task-oriented, emotion-oriented and avoidance coping), using the short version of the...

Background: A broad scoping exercise was undertaken to assess and quantify haemophilia nursing care in Europe. Methods: A web-based survey in English was sent to known networks of haemophilia nurses working in Europe. This survey included questions concerning the haemophilia treatment centre, educational level, work activities, gaining knowledge/ e...

Long-term adherence to prophylactic therapy is the key to successful prevention of bleeds in severe haemophilia. The present study aims to provide a systematic review of the literature on the determinants of adherence to prophylaxis in haemophilia. A literature search in the largest medical databases in Oct 2011 yielded 880 articles, which were red...

Nowadays, nearly all severe haemophilia patients in the Netherlands practice self infusion at home. Learning intravenous administration of clotting factor requires time and effort. In order to inform patients about the burden and time-investment needed to learn intravenous infusion, we performed a two-centre retrospective study. All data on the lea...