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

Abstract

Data availabilityThe data that support the findings of this study are available from the corresponding author upon reasonable request.

Surgical management of auricular arteriovenous malformations: A literature review

“…“Radiological characteristics” are also not included in CDS because imaging follow‐up is not mandatory, but it should be reported if the examination was performed. In addition, although the OVAMA Steering Group has conducted studies to explore how to measure these core domains, there is no final core outcome measurement set 82–85 …”

“…In addition, although the OVAMA Steering Group has conducted studies to explore how to measure these core domains, there is no final core outcome measurement set. [82][83][84][85] After evaluating treatment outcomes, follow-up is necessary for patients who no longer need special intervention. 7,8,11,24 When conditions permit, both clinical and imaging follow-up should be used because imaging can detect lesion changes more accurately and earlier than clinical follow-up.…”

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

“…The cut-off points for age were determined during the concept interviews in the OVAMA-project and based on the comprehensibility of the questions by different age groups. 14…”

“…Therefore, the aim of this study is to examine appearance-related concerns in patients with VMs by using the condition-specific OVAMA (Outcome measures for VAscular MAlformations) questionnaire. 4,13,14 Furthermore, we assessed how the appearance of VMs affects HR-QoL in these patients.…”

Targeted treatment of vascular anomalies

“…There is still an absence of observational natural history studies and clinically meaningful outcome measures for therapeutic interventions for vascular anomalies. Significant strides are being made to develop outcome measures that capture patient values and address the heterogeneity of this patient population ( Lokhorst et al, 2021 ). Because gene discovery is outpacing the understanding of the resultant downstream molecular effects and genotype–phenotype correlations, patients are receiving off-label drugs outside of clinical trials in hopes of relieving symptoms; however, validated outcome measures of therapeutic response are lacking.…”