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Patients with complex VAs experience multiple barriers to accessing expert care. It is imperative to understand which factors support these patients\u2019 ability to navigate the healthcare system.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>We surveyed adult patients with VAs using previously validated measures, recruiting participants from five patient advocacy groups and multidisciplinary VA clinics. The primary outcome was self-reported ability to access needed medical care, using the \u201cNavigating the Healthcare System\u201d subscale of the Health Literacy Questionnaire. We evaluated factors associated with the ability to navigate the healthcare system using multivariate linear regression (<jats:italic>n<\/jats:italic>\u2009=\u2009136). We also performed an exploratory model that included the primary care doctor\u2019s knowledge of VAs for the subset of participants with a primary care doctor (<jats:italic>n<\/jats:italic>\u2009=\u2009114). Participants were predominantly women (<jats:italic>n<\/jats:italic>\u2009=\u200990, 66%), White and non-Hispanic (<jats:italic>n<\/jats:italic>\u2009=\u2009109, 73%), and college-educated (<jats:italic>n<\/jats:italic>\u2009=\u2009101, 73%). Most participants had PIK3CA-Related Overgrowth Spectrum (<jats:italic>n<\/jats:italic>\u2009=\u2009107, 78%). Most participants reported that navigating the healthcare system was \u201csometimes\u201d or \u201cusually difficult\u201d (mean score 16.4\/30, standard deviation 5.6). In multivariate linear regression, ability to navigate the healthcare system was associated positively with quality of information exchange (\u03b2\u2009=\u20090.38, 95% Confidence Interval (CI) 0.22 to 0.55, <jats:italic>p<\/jats:italic>\u2009&lt;.001) and whether patients had VA specialists (\u03b2\u2009=\u20092.31, 95% CI 0.35 to 4.28, <jats:italic>p<\/jats:italic>\u2009=.021), but not associated with patient self-advocacy, anxiety, education, age, race and ethnicity, gender, or having a primary care doctor. In exploratory analysis of participants with primary care doctors, ability to navigate the healthcare system was positively associated with quality of information exchange (\u03b2\u2009=\u20090.27, 95% CI 0.09 to 0.45, <jats:italic>p<\/jats:italic>\u2009=.004), having a VA specialist (\u03b2\u2009=\u20092.31, 95% CI 0.22 to 4.39, <jats:italic>p<\/jats:italic>\u2009=.031), and primary care doctors\u2019 VA knowledge (\u03b2\u2009=\u20090.27, 95% CI 0.04 to 0.50, <jats:italic>p<\/jats:italic>\u2009=.023).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>Patients with VAs struggle to navigate the healthcare system. High-quality information from clinicians and more knowledgeable primary care doctors might help patients to access needed care. Relying on patient self-advocacy is insufficient. Future efforts should focus on patient-directed and clinician-directed educational interventions. Additionally, future work should assess the structural barriers that impede healthcare access for these patients.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13023-024-03018-y","type":"journal-article","created":{"date-parts":[[2024,1,18]],"date-time":"2024-01-18T16:03:26Z","timestamp":1705593806000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Factors affecting the ability of patients with complex vascular anomalies to navigate the healthcare system"],"prefix":"10.1186","volume":"19","author":[{"given":"Bryan","family":"Sisk","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sunny","family":"Lin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4778-8515","authenticated-orcid":false,"given":"Anna M.","family":"Kerr","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,1,18]]},"reference":[{"key":"3018_CR1","doi-asserted-by":"publisher","first-page":"453","DOI":"10.1007\/978-3-030-49980-8_31","volume-title":"Benign Hematologic disorders in children: a clinical guide","author":"AD Wolfe","year":"2021","unstructured":"Wolfe AD. 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Participants reviewed an exempt information sheet prior to completing this online survey.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"No personally identifiable data is contained in this article.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"All authors declare that they do not have any competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"BAS is a pediatric oncology physician specializing in VMs; AK is a medical educator with a PhD in communication. Both authors had led multiple prior qualitative and quantitative studies. SL is a public health research with expertise in systems-level approaches to improving healthcare delivery, and training and experience in biostatistics.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Authors\u2019 information"}}],"article-number":"18"}}