Responsiveness of the condition-specific Outcome measures for VAscular MAlformations (OVAMA) questionnaire to measure symptoms and appearance in patients with vascular malformations.

Background: Evidence-based guidelines for the treatment of vascular malformations (VMs) are not readily available, possibly due to the diversity in methods used to evaluate treatment efficacy in clinical research, complicating the aggregation and comparison of study results. The Outcome measures for VAscular MAlformations (OVAMA) questionnaire was developed to measure uniformly symptoms and appearance (i.e.

Genetic mutations and phenotype characteristics in peripheral vascular malformations: A systematic review.

Vascular malformations (VMs) are clinically diverse with regard to the vessel type, anatomical location, tissue involvement and size. Consequently, symptoms and disease impact differ significantly. Diverse causative mutations in more and more genes are discovered and play a major role in the development of VMs.

Characterization of Patient-Derived GNAQ Mutated Endothelial Cells from Capillary Malformations.

Capillary malformations (CM) (port-wine stains) are congenital skin lesions that are characterized by dilated capillaries and postcapillary venules. CMs are caused by altered functioning of the vascular endothelium. Somatic genetic mutations have predominantly been identified in the endothelial cells of CMs, providing an opportunity for the development of targeted therapies.

Healthcare professionals' views on shared decision-making in plastic surgery in the Netherlands.

Background: In shared decision-making (SDM), patients and healthcare professionals (HCPs) reach a joint clinical decision based on the best available evidence and the patient's preferences. SDM seems particularly valuable in plastic surgery, as often multiple treatment options are available. This cross-sectional online survey study aimed to assess HCPs' views and knowledge about SDM, identify facilitators and barriers of SDM, and determine specific requirements for SDM within plastic surgery.

Patient-Reported Outcomes of Medical Tattooing for Capillary Malformations.

Background: Patients with capillary malformations (CMs) may undergo medical tattooing (MT) as an alternative to laser therapy. But little is known about treatment results and impact from the patients' perspective.

Objectives: In this cross-sectional digital survey study, we evaluated the patient-reported outcomes of MT for CMs.

Lymphatic differentiation and microvascular proliferation in benign vascular lesions of skin and soft tissue: Diagnostic features following the International Society for The Study of Vascular Anomalies Classification-A retrospective study.

Background: Discrepancies have been noted between the clinical and histologic diagnosis of vascular malformations.

Objective: To evaluate the effectiveness of the International Society for Study of Vascular Anomalies (ISSVA) classification in diagnosing benign vascular anomalies based on clinical and (immuno) histologic parameters, focusing on lymphatic differentiation and vascular proliferation.

Method: A retrospective study of 121 consecutive patients with benign skin and soft-tissue vascular anomalies located in the head and neck region (pyogenic granulomas and angioma senilis were excluded) by applying multiplex immunohistochemistry staining for lymph vessels (D2-40), endothelial blood vessels, and proliferating cells (Ki67).

Microvascular proliferation in arteriovenous malformation of the hand worsens during pregnancy: a case report.

Unlabelled: Arteriovenous malformations (AVMs) are rare congenital disorders characterized by episodes of disproportionate growth that can cause pain and severe bleeding, with microvascular proliferation (MVP) associated with these episodes. Hormonal influences can also worsen the symptoms in patients with AVM.

Case Presentation: This case report presents a female patient with congenital vascular malformations of the left hand since birth, whose symptoms worsened during puberty and pregnancy, ultimately leading to amputation of the left hand due to unbearable pain and loss of function.

Appearance-related concerns and their impact on health-related quality of life in patients with peripheral vascular malformations.

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.

A core outcome domain set for clinical research on capillary malformations (the COSCAM project): an e-Delphi process and consensus meeting.

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 outcome domain set (CDS), as part of a core outcome set (COS), for clinical research on CMs.

The long-term progression of macrodactyly.

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 the treatment and follow-up of macrodactyly.

Towards evidence based plastic surgery; how a national research agenda can unite research.

We describe the development of the Research Agenda of the Dutch Society for Plastic Surgery, supported and democratically created by plastic surgeons, patients, and other stakeholders. The agenda contains the 10 most relevant knowledge gaps encountered in clinical practice, as prioritized by the abovementioned groups. The aim is to stimulate national collaborations and research networks to initiate trials to answer these knowledge gaps.

Clinical characteristics associated with pain in patients with peripheral vascular malformations.

Objective: Vascular malformations (VM) can negatively impact the patient's quality of life (QoL). 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 QoL.

Therapeutic Strategies for Untreated Capillary Malformations of the Head and Neck Region: A Systematic Review and Meta-Analyses.

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 tattooing.

Development of a core outcome domain set for clinical research on capillary malformations (the COSCAM project).

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 use in future CM trials, in which we will first develop a core outcome (sub)domain set (CDS). Here, we describe the methods for the development of a CDS and present the results of the first development stage.

Development of a condition-specific patient-reported outcome measure for measuring symptoms and appearance in vascular malformations: the OVAMA questionnaire.

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 perspective.

Surgical Treatment of Peripheral Vascular Malformations: A Systematic Review and Meta-Analysis.

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 treatment of vascular malformations.

Responsiveness of quality of life measures in children with peripheral vascular malformations: The OVAMA project.

Background: The OVAMA (utcome easures for scular lformations) 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 malformations, we explored if two widely used PROMs were responsive to changes: the Pediatric Quality of Life Inventory (PedsQL) and the Children's Dermatology Life Quality Index (CDLQI).

Responsiveness of quality-of-life measures in patients with peripheral vascular malformations: the OVAMA project.

Background: 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.

Objectives: To assess the responsiveness of two widely used generic QoL PROMs, the Medical Outcomes Study Short Form 36 (SF-36) and Skindex-29, in adult patients with vascular malformations.

Electrosclerotherapy as a Novel Treatment Option for Hypertrophic Capillary Malformations: A Randomized Controlled Pilot Trial.

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 tissue. Electroporation disrupts the transmembrane potential, facilitating bleomycin transportation across the vessel wall, hypothetically leading to targeted drug delivery and increased effectiveness of bleomycin in CMs.

Outcome measurement instruments for peripheral vascular malformations and an assessment of the measurement properties: a systematic review.

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 identify all outcome measurement instruments available for vascular malformations, and to evaluate their measurement properties.

Navigating the landscape of core outcome set development in dermatology.

The development of core outcome sets (COSs; ie, a minimum set of core outcomes that should be measured and reported in all trials or in clinical practice for a specific condition) in dermatology is increasing in pace. A total of 44 dermatology-related COS projects have been registered in the online Core Outcome Measures in Effectiveness Trials database (http://www.comet-initiative.

Patient-Reported Outcomes of Bleomycin Sclerotherapy for Low-Flow Vascular Malformations and Predictors of Improvement.

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 vascular malformations treated with bleomycin sclerotherapy (June 2010-November 2015) completed a questionnaire evaluating disease symptoms, QoL (Short Form 36), patient-perceived change in health status (Global Rating of Change scales) and treatment satisfaction.