Abstract

PurposeThere 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 MethodsA 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. QoL was assessed for the patient’s status before and after treatment and was analyzed relative to an age and sex-matched Dutch reference population. Predictive factors associated with QoL and patient-perceived improvement in overall health status were assessed using multivariable linear and logistic regression analyses, respectively.ResultsSeventy-seven patients, with a median follow-up of 22 months, were enrolled. About half of the respondents (49.3%) indicated that they perceived (any form of) improvement in their overall health status. Most often improved were the specific health aspects ‘pain’ (54.5%) and ‘overall severity of symptoms’ (57.1%). No factors were significantly predictive for patient-perceived improvement in health with respect to the vascular malformation. Impairment in work- or study-related activities prior to sclerotherapy was found to negatively impact physical QoL at follow-up (p = 0.03).ConclusionApproximately half of patients with low-flow vascular malformations indicate an improvement in overall health status following bleomycin sclerotherapy, particularly concerning pain and severity of symptoms. However, most patients only perceived little to moderate improvement to their health and desire further treatment.

Highlights

  • Low-flow vascular malformations, defined as lymphatic malformations (LMs), venous malformations (VMs) or combined lymphatic-venous malformations (LVMs) [1, 2], can cause a great variety of complaints ranging from pain to dissatisfaction with appearance, which can dramatically affect the patient’s quality of life (QoL) [3, 4].S

  • 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

  • Approximately half of patients with low-flow vascular malformations indicate an improvement in overall health status following bleomycin sclerotherapy, concerning pain and severity of symptoms

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Summary

Introduction

Low-flow vascular malformations, defined as lymphatic malformations (LMs), venous malformations (VMs) or combined lymphatic-venous malformations (LVMs) [1, 2], can cause a great variety of complaints ranging from pain to dissatisfaction with appearance, which can dramatically affect the patient’s quality of life (QoL) [3, 4].S. Low-flow vascular malformations, defined as lymphatic malformations (LMs), venous malformations (VMs) or combined lymphatic-venous malformations (LVMs) [1, 2], can cause a great variety of complaints ranging from pain to dissatisfaction with appearance, which can dramatically affect the patient’s quality of life (QoL) [3, 4]. Published observational studies show that bleomycin can reduce the size of both LMs and VMs [12, 15] This is usually measured with non-radiologic assessments of change in size or appearance that are subject to the perception of the physician [12]. The objective of this study is to explore the long-term treatment outcomes of bleomycin sclerotherapy from the perspective of the patient by using an existing patient-reported outcome measures (PROM) to measure QoL and patient-perceived changes in health after treatment. We aimed to identify variables that are associated with patient-perceived improvement and health-related QoL

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