A5046607680- Hemophilia Treatment and Research
- Platelet Disorders and Treatments
- Coagulation, Bradykinin, Polyphosphates, and Angioedema
- Myeloproliferative Neoplasms: Diagnosis and Treatment
- Blood Coagulation and Thrombosis Mechanisms
- Chronic Myeloid Leukemia Treatments
- Hip disorders and treatments
- Hip and Femur Fractures
- Antiplatelet Therapy and Cardiovascular Diseases
- Adolescent and Pediatric Healthcare
- Knee injuries and reconstruction techniques
- Frailty in Older Adults
- Emergency and Acute Care Studies
- Blood properties and coagulation
- Orthopaedic implants and arthroplasty
Utrecht University
2019-2023
University Medical Center Utrecht
2017-2023
Joint bleeds in patients with haemophilia may result haemophilic arthropathy. Monitoring joint health is essential for identifying early signs of deterioration and allows timely adjustment treatment.The aim was to describe changes over 5-10 years follow-up identify factors associated haemophilia.A post hoc analysis performed from previous cohort studies moderate/severe haemophilia, ≥16 years. ankles, knees elbows measured the Haemophilia Health Score (HJHS) 2006-2008 (T0) 2011-2016 (T1)....
Abstract Introduction The Hemophilia Joint Health Score (HJHS) was developed to detect early changes in joint health children and adolescents with haemophilia. HJHS is considered by some be too time consuming for clinical use this may limit broad adoption. Aim This study a first step develop shorter and/or more convenient version of the measurement function young adults haemophilia, combining real‐life data expert opinion. Methods A cross‐sectional multicenter secondary analysis on pooled...
Introduction The Haemophilia Activities List (HAL) is a preferred instrument to measure self-reported limitations in activities persons with haemophilia (PWH). Information on reliability and interpretability of HAL scores lacking. Aim To examine the test-retest smallest detectable change (SDC) adult PWH. Methods Fifty (≥18 years) mild severe completed (42 items, 7 domains, optimum 100) at baseline (T0) 3-4 weeks later (T1). intraclass correlation coefficient (ICC) SDC were calculated for sum...
Abstract Introduction The Paediatric Haemophilia Activities List (pedHAL) assesses self‐reported limitations in activities and participation children with haemophilia. Aim To assess longitudinal changes, child‐parent agreement to identify which pedHAL domains yielded most information boys access early prophylaxis. Methods (53 items, 7 domains, optimum 100) was completed annually at the Van Creveldkliniek by aged 4‐18 years moderate/severe haemophilia their parents. Development of relation...
Background Joint bleeds are the hallmark of hemophilia, leading to a painful arthritic condition called as hemophilic arthropathy (HA). Exercise programs frequently used improve physical functioning in persons with HA. As hemophilia is rare disease, there not many physiotherapists who experienced field and regular physiotherapy sessions an physiotherapist feasible for Blended care innovative intervention that can support HA at home perform advised activities exercises provide self-management...
The use of patient-reported outcomes measures (PROMs) is important in hemophilia care, as it facilitates communication between patients and clinicians promotes patient-centered care. Currently, a variety PROMs with insufficient psychometric properties are used. Patient-reported measurement information system (PROMIS) measures, including Computer Adaptive Tests, were designed to measure generically more efficiently and, therefore, an alternative for the existing PROMs.To assess feasibility,...
The Haemophilia Activities List (HAL) was developed to measure activities and participation in persons with haemophilia (PWH). Shortening the questionnaire may facilitate use of HAL.The aim this study determine which items HAL are redundant, construct a shorter version HAL, validity HALshort .A secondary analysis performed on pooled data two published studies using (seven domains, 42 items, optimum score: 100) adults A/B. Data were divided into derivation (62%) validation set (38%)....
Regular physiotherapy with a physiotherapist experienced in the field is not feasible for many patients haemophilia. We, therefore, developed blended intervention persons haemophilic arthropathy (HA) (e-Exercise HA), integrating face-to-face smartphone application.The aim of study was to determine proof concept e- Exercise HA and evaluate feasibility.Proof evaluated by single-case multiple baseline design. Physical activity (PA) measured an accelerometer during baseline, post-intervention...
Abstract Introduction The paediatric Haemophilia Activities List (pedHAL) was developed to measure activities and participation in children youth with haemophilia. Results from international studies provide an opportunity determine which items are universally important. Aim aim of this study the pedHAL redundant construct a shorter version pedHAL. Methods This is cross‐sectional multicentre secondary analysis on pooled data published using (7 domains, 53 items, optimum score: 100)...
Abstract Introduction The Haemophilia Activities List (HAL) and paediatric HAL assess self‐reported limitations in various daily activities. To reduce patient burden, shorter versions of the pedHAL (22 items) (18 have been developed. Aim This study aimed to determine agreement between pedHAL/HAL full short construct validity internal consistency / persons with haemophilia (PWH). Methods A cross‐sectional secondary analysis Hemophilia Netherlands‐6 national survey was performed. Adult PWH...
<sec> <title>BACKGROUND</title> Joint bleeds are the hallmark of hemophilia, leading to a painful arthritic condition called as hemophilic arthropathy (HA). Exercise programs frequently used improve physical functioning in persons with HA. As hemophilia is rare disease, there not many physiotherapists who experienced field and regular physiotherapy sessions an physiotherapist feasible for Blended care innovative intervention that can support HA at home perform advised activities exercises...