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231
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Citations since 2017
Publications
Publications (23)
There is a variety of outcome reporting in the clinical research on peripheral vascular malformations including capillary, venous, lymphatic, arteriovenous and combined malformations. Without harmonization of outcome measures, treatments cannot be properly compared. This hampers the development of evidence‐based treatment guidelines, urgently neede...
Background:
Surgical treatment of peripheral vascular malformations is widely performed as primary and secondary treatments. Excellent results have been reported; however, it is thought that complications are likely to occur because of damage to adjacent structures. This systematic review aimed to elucidate the indications and outcomes of surgical...
Summary
Background
The symptoms and appearance of vascular malformations can severely harm a patient’s quality of life. The aim of treatment of vascular malformations generally is to improve condition‐specific symptoms and/or appearance. Therefore, it is highly important to start testing treatment effects in clinical studies from the patient’s pers...
Background:
Sclerotherapy has become the gold standard for the first-line therapy of most venous (VMs) and lymphatic malformations (LMs) of the head and neck. Numerous sclerosing agents are used to treat these low-flow vascular malformations; however, to date, it remains unclear which sclerosing agent is superior in terms of effectiveness and safe...
Background
: Treatment indications of congenital melanocytic naevi (CMN) have shifted from prevention of malignant transformation towards improvement of appearance and psychosocial health. Surgical excision is often preferred. However, its safety and effectiveness remain unclear.
Objective
: To assess the outcomes of surgical excision of medium-to...
Background
Peripheral vascular malformations (VMs) may lead to disfigurement of the body and face, potentially impairing aesthetic appearance. Yet, data on appearance in this population is limited. This study aimed to examine appearance-related concerns and their impact on health-related quality of life (HR-QoL) in patients with VMs.
Methods
In th...
Introduction:
Medium-to-giant congenital melanocytic nevi (CMN) can have a severe impact on life, due to their abnormal appearance, and association with melanoma and neurological complications. During the last decade, treatment has shifted from prevention of malignant transformation towards improvement of appearance and psychosocial health. To ena...
Background:
Treatment indications of congenital melanocytic nevi (CMN) have shifted from prevention of malignant transformation towards improvement of appearance and psychosocial health. Surgical excision is often preferred. However, its safety and effectiveness remain unclear.
Objective:
To assess the outcomes of surgical excision of medium-to-...
Introduction
: Vascular malformations of the upper extremity are uncommon and there is great heterogeneity in their occurrence and appearance. There is no golden standard for the treatment of vascular malformations of the upper extremity and limited evidence on this subject has been published.
Objective
: This review aims to answer the question wh...
Background
Madelung deformity is a rare congenital hand difference with little known regarding the patient perspective. In this cross-sectional survey study, we harnessed the global reach of social media to understand the clinical spectrum of Madelung deformity and its impact on physical, mental, and social health.
Methods
A survey was developed b...
Objective
Vascular malformations can negatively impact the patient’s quality of life. Pain is a common problem in these patients. The aim of this study was to investigate risk factors associated with pain and to assess how pain affects quality of life.
Methods
This prospective cross-sectional study was conducted in a tertiary vascular anomaly expe...
Background
Macrodactyly is a rare congenital disorder of overgrowth affecting the digits of the upper or lower extremity. Mostly, patients are surgically treated during childhood to reduce the digit or to stop growth. There are no standardized guidelines for treatment and follow-up of macrodactyly. Consequently, follow-up may not be regularly sched...
Background
The OVAMA (Outcome Measures for VAscular MAlformations) project determined quality of life (QoL) as a core outcome domain for evaluating treatment effect in vascular malformations. To correctly evaluate treatment effect on QoL, patient-reported outcome measures (PROMs) are needed that are responsive to changes. In children with vascular...
Vascular malformations are a group of rare congenital (present at birth) vessel anomalies. Mostly visible as a bumpy mass different in colour from normal skin, they can cause disfigurement of the face or body.
Patients often experience pain, physical impairment, bleeding, and psycho‐social problems, leading to an overall poor quality of life. Thus,...
血管畸形是一组罕见的先天性(出生时存在的)血管畸形。它们大多可见,为与正常皮肤颜色不同的凹凸不平的肿块,可导致面部毁容或身体的外观缺陷。
患者经常出现疼痛、身体损伤、出血和心理社会问题,导致其总体生活质量较差。因此,治疗的一个主要目标是提高他们的生活质量。生活质量是通过由患者填写的调查问卷来衡量的。
为了确定患者的生活质量在治疗后是改善了还是恶化了,调查问卷要能够探测出随着时间的推移发生的变化,这是至关重要的。从来没有人研究过生活质量调查问卷是否可以探测出血管畸形患者中的变化。因此,无法评估目前的治疗是否真的改善了这些患者的生活质量。
这项来自荷兰和美国的研究旨在查明两个广泛使用的生活质量调查问卷“SF‐36”和“Skindex‐29”是否能够探测出血管畸形患者中的变化。67 名患者在两个时...
Introduction:
The OVAMA (Outcome measures for vascular malformations) project determined quality of life (QoL) as a core outcome domain for patients with vascular malformations. In order to measure how current therapeutic strategies alter QoL in these patients, a patient-reported outcome measurement (PROM) responsive to changes in QoL is required....
Objective:
To evaluate complications of pregnancy, including thromboembolism, in women with extensive vascular malformations associated with Klippel-Trenaunay Syndrome (KTS).
Design:
Nationwide cross-sectional study.
Setting:
Two tertiary expert centers and the Dutch Klippel-Trenaunay patient organization.
Sample:
Adult women with KTS.
Meth...
Projects
Projects (2)
We aimed to evaluate the safety and effectiveness of surgical excision of medium-to-giant or difficult-to-excise congenital melanocytic nevi. Safety was our primary outcome, measured by surgical complications. Effectiveness was our secondary outcome, measured by patient and physician satisfaction of cosmetic and functional outcomes, and all core outcomes of the Outcomes for Congenital Melanocytic Nevi (OCOMEN) project.
The mission of the Outcome measures for VAscular MAlformations (OVAMA) project is to uniform outcome reporting in clinical research on vascular malformations. At first, a set of core outcome domains was developed. The next step is selecting or developing appropriate outcome measurement instruments for measuring the core domains, i.e. developing a core outcome measurement set. Currently, we are almost finished developing a disease-specific questionnaire: the OVAMA questionnaire.
