Sophie Horbach

Sophie Horbach
Academisch Medisch Centrum Universiteit van Amsterdam | AMC · Department of Plastic and Reconstructive Surgery

MD PhD

About

44
Publications
9,549
Reads
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818
Citations
Citations since 2017
32 Research Items
781 Citations
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2017201820192020202120222023050100150
2017201820192020202120222023050100150
2017201820192020202120222023050100150
Additional affiliations
September 2014 - July 2017
Academisch Medisch Centrum Universiteit van Amsterdam
Position
  • PhD Student

Publications

Publications (44)
Article
Full-text available
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...
Article
Full-text available
Background: There is limited evidence on the best available treatment options for capillary malformations (CMs), mainly due to the absence of uniform outcome measures in trials on therapies. A Core Outcome Set (COS) enables standard reporting of trial outcomes, which facilitates comparison of treatment results. Objectives: To develop a core outc...
Article
Full-text available
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...
Article
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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...
Article
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Background Capillary malformations of the head and neck region often cause psychological and physical burden. As the effectiveness of modern laser and light therapies is still suboptimal, patients often seek different therapeutic strategies. Other recognized, but not routinely proposed therapies include cosmetic camouflage, surgery, and medical tat...
Article
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Background Core outcome sets (COS) should be relevant to key stakeholders and widely applicable and usable. Ideally, they are developed for international use to allow optimal data synthesis from trials. Electronic Delphi surveys are commonly used to facilitate global participation; however, this has limitations. It is common for these surveys to be...
Article
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Background: Due to a large variety in treatment outcomes reported in therapeutic trials and lacking patient-relevant outcomes, it is hard to adequately compare and improve current therapies for patients with capillary malformations (CMs). The Core Outcome Set for Capillary Malformations (COSCAM) project aims to develop a core outcome set (COS) for...
Article
Full-text available
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...
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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...
Article
Full-text available
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...
Article
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,...
Article
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...
Article
Full-text available
Purpose The Outcome measures for vascular malformation (OVAMA) group reached consensus on the core outcome domains for the core outcome set (COS) for peripheral vascular malformations (venous, lymphatic and arteriovenous malformations). However, it is unclear which instruments should be used to measure these domains. Therefore, our aims were to ide...
Article
Full-text available
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....
Article
Background: Bleomycin sclerotherapy is ineffective for treating capillary malformations (CMs) because bleomycin cannot adequately be injected into the small-diameter capillary lumina. Electrosclerotherapy (EST) might be a new treatment modality for CMs, as it combines bleomycin sclerotherapy and "electroporation"-an electric field applied to the t...
Article
Full-text available
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...
Article
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The development of core outcome sets (COS), i.e. a minimum set of 'core outcomes' that should be measured and reported in all trials or clinical practice of a specific condition, in dermatology is gathering pace. A total of 44 dermatology-related COS projects have been registered in the online Core Outcome Measures in Effectiveness Trials (COMET) d...
Article
Full-text available
Purpose: There is paucity of data on patient-perceived outcomes of bleomycin sclerotherapy for low-flow vascular malformations. In this study, the long-term outcomes of bleomycin sclerotherapy were investigated in terms of quality of life (QoL) and patient-perceived changes in health. Materials and methods: A cohort of Dutch patients with vascul...
Article
Full-text available
Clinical trials are needed to find out whether drugs or other treatments work for people with skin diseases. People who take part in a clinical trial are often put into two groups. One group gets the test treatment and the other gets the control treatment. After the treatment has been tried over a period of time, the effect of the treatment in both...
Article
业界需要借助临床试验来查明药物或其他治疗对皮肤病患者是否有效。参与临床试验的患者通常被分成两组。一组接受测试治疗,另一组则接受对照治疗。在进行了一段时间的治疗之后,相关人员就会将两组的治疗效果进行比较。病情改善得越多、副作用越少,治疗的效果就越好。非常重要的一点是,要正确衡量患者对治疗的反应,否则研究结论将毫无用处。以瘙痒症状为例,医生可以直接询问患者,也可以查看抓痕。这两种“结果”会提供不同的信息。同等重要的是,研究人员应在对相似患者组进行临床试验时包含相同的结果。以异位性湿疹为例,如果一位研究人员仅衡量皮肤发红、一位研究人员仅衡量瘙痒,而另一位研究人员仅衡量生活质量,那么就很难比较不同治疗的结果。您可能会想,到如今,全球的研究人员会齐聚一堂来选择在某些皮肤疾病中应衡量哪些结果。但事实是,...
Article
Vascular malformations are congenital anomalies of the vascular and/or lymphatic system that affect the head and neck region. The most common treatment options are sclerotherapy, laser therapy, surgery, and embolization. Because vascular malformations are variable in type, size, extent, and location, it is a challenge to select methods for evaluati...
Article
外周血管畸形(VM)是指由在胚胎中形成的血管发育缺陷而导致的胎记或肿胀。不同的类型可根据其主要组成部分来分类:分为淋巴管(LM)、血管(VM)或结合动脉和血管(AVM)。目前难以评估现有的各种医疗和外科手术治疗方法,因为医学界尚没有衡量结果指标的统一方法。该国际组织针对医务人员和患者开展了一项在线调查,以决定未来的临床试验中需要重点记录的因素。他们首先列出了病情及其疗法的各种方面,涉及36个领域共97个具体项目。随后,他们邀请了167名医生和134名患者及患者父母对这些项目进行打分,从0(不重要)到4(至关重要)。经过3轮调查和共识会议之后,选项范围逐渐缩小。最终达成一致的“核心指标集”涵盖:扫描结果;医生对由VM压力引起的问题的评估;患者或父母对症状、疼痛和生活质量的评估;以及他们对治疗、...
Article
Full-text available
Introduction The current state-of-the-art treatment modality for hypertrophic capillary malformations (CMs), laser therapy, has a considerable rate of non-responders and recurrence. Intralesional bleomycin injections (or ‘sclerotherapy’) are commonly used to treat venous and lymphatic malformations with an excellent effect, but these intravascular...
Article
Results of clinical trials are the most important information source for generating external clinical evidence. The use of different outcomes across trials, which investigate similar interventions for similar patient groups, significantly limits the interpretation, comparability and clinical application of trial results. Core outcome sets (COSs) ai...
Article
Full-text available
Background: An important limitation in vascular malformation research is the heterogeneity in outcome measures used for the evaluation of treatment outcome. Objective: The Outcome measures for VAscular MAlformations (OVAMA) project aimed to reach international consensus on a core outcome set (COS) for clinical research on peripheral vascular mal...
Article
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...
Article
Full-text available
Background: In shared decision-making, clinicians and patients arrive at a joint treatment decision, by incorporating best available evidence and the patients' personal values and preferences. Little is known about the role of shared decision-making in managing patients with congenital vascular malformations, for which preference-sensitive decisio...
Article
Full-text available
Introduction Low-flow vascular malformations are congenital abnormalities of the veins, capillaries or lymphatic vessels or a combination of the previous. Compressive garments are frequently used as a first-line treatment option for low-flow vascular malformations of the extremities with the purpose of relieving symptoms. Yet, the benefits and harm...
Conference Paper
Full-text available
Vascular Malformations on soft tissue: Clinical versus Histological Diagnosis Objective The International Society for the Study of Vascular Anomalies (ISSVA) classification, is based on histopathological findings. In daily practice, diagnosis are made clinically. For effective therapeutic decision-making and research, correct diagnoses are necessa...
Article
Patients with extensive lymphatic malformations associated with tissue overgrowth syndromes (such as Klippel-Trenaunay syndrome and CLOVES) often pose a therapeutic challenge for physicians. In recent years, it has been suggested that oral sildenafil therapy might be used to treat congenital lymphatic malformations. However, this possible new thera...
Article
Background: Vascular malformations are congenital anomalies of the vascular system. Intralesional bleomycin injections are commonly used to treat vascular malformations. However, pulmonary fibrosis could potentially be a severe complication, known from systemic bleomycin therapy for malignancies. In this study, the authors investigate the effectiv...
Article
Full-text available
Unlabelled: Pre-operative assessment of the deformity in scaphoid non-unions influences surgical decision-making. To characterize deformity, we used three-dimensional computed tomographic modelling in 28 scaphoid non-unions, and quantified bone loss, dorsal osteophyte volume and flexion deformity. We further related these three-dimensional paramet...
Article
Full-text available
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...
Conference Paper
Full-text available
Journal of Investigative Dermatology (2015) 135, S32–S42. doi:10.1038/jid.2015.269
Article
Introduction: Gender reassignment surgery is the keystone of the treatment of transgender patients. For male-to-female transgenders, this involves the creation of a neovagina. Many surgical methods for vaginoplasty have been opted. The penile skin inversion technique is the method of choice for most gender surgeons. However, the optimal surgical t...
Conference Paper
Purpose: Research performed in our laboratory has shown that the gasotransmitter hydrogen sulfide (HS) has a powerful protective effect against the detrimental effects of ischemia-reperfusion injury (IRI) when delivered either before or after an ischemic event has occurred. The optimal timing of treatment, however, remains undefined. In order to be...
Conference Paper
Our lab and others have shown that pharmacologic pre- and post-conditioning with the gasotransmitter hydrogen sulfide protects against ischemia-reperfusion injury (IRI). However, the optimal time of delivery relative to the ischemic interval has not yet been defined. We sought to clearly define the therapeutic window during which delivery of HS pro...

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Projects (4)
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.