The Lived Experience of Patients with Vascular Malformations: A Qualitative Meta-synthesis

Abstract

The purpose of this study was to synthesize the existing qualitative literature on the lived experience of patients with vascular malformations to identify emergent themes and new areas for clinical care and research. A formal meta-synthesis was conducted, which followed 4 steps: (1) form the clinical question and refine search criteria; (2) complete a literature review following Preferred Reporting Items for Reviews and Meta-Analysis; (3) quality appraisal of included literature with Lett’s Critical Review Form; and (4) completion of team-based reciprocal translation and thematic analysis to synthesize the literature. PubMed, CINAHL, Johanna Briggs, and Embase were used to retrieve English language, peer-reviewed qualitative, and mixed-method articles from 1996 to May 2023. Six articles met the criteria for inclusion. A wide range of vascular malformations were represented, ranging from slow-flow malformation to high-flow or complex with associated overgrowth. Studies were conducted in the United States, France, and Germany, focusing mainly on the adult experience, with 1 article focusing solely on pediatrics. Three main themes emerged: social isolation, uncertainty and hope, and healthcare experiences. The overarching themes of social isolation, uncertainty and hope, and healthcare experiences each offer avenues to inform clinical practice, provide education for healthcare providers managing patients with vascular malformations, and future research to better understand how each of these themes affect patients. This qualitative meta-synthesis is a novel method for this field and provides new insights into the lived experience of those with vascular malformations.