Health screening behaviors among adults with hereditary hemorrhagic telangiectasia in North America

Melanie Baxter, Lori Erby, Debra Roter, Barbara A. Bernhardt, Peter Terry, Alan Guttmacher

Research output: Contribution to journalArticlepeer-review

2 Scopus citations


Purpose:This study aimed to identify factors that influence screening behaviors of adults with hereditary hemorrhagic telangiectasia (HHT).Methods:Participants with a self-reported diagnosis of HHT were recruited from the HHT Foundation International, Inc.; the "HHT Awareness" Facebook group; and six HHT clinics. A cross-sectional mixed methods survey was administered to investigate the relationships among the Health Belief model constructs, the domains of illness representations, and HHT-specific screening behaviors consistent with recommended guidelines.Results:A total of 320 participants reported rates of cerebral arteriovenous malformation (AVM) screenings, pulmonary AVM screenings, and HHT annual checkups that were 82.0, 67.1, and 56.5%, respectively. Logistical regression analysis showed that perceived barriers (β = -0.114, P < 0.001), perceived susceptibility (β = 0.117, P < 0.05), treatment control (β = 0.078, P < 0.05), and emotional representations (β = 0.067, P < 0.05) were significant predictors of HHT screening. Open-ended responses revealed perceived barriers to screening, including a lack of health-care providers (HCPs) familiar with and/or knowledgeable about HHT.Conclusion:Our results reveal suboptimal screening rates among adults with HHT and identify several factors influencing these behaviors. We suggest that there is a need for increased provider education regarding HHT as well as approaches that providers can use to improve screening adherence.

Original languageEnglish (US)
Pages (from-to)659-666
Number of pages8
JournalGenetics in Medicine
Issue number6
StatePublished - Jun 1 2017


  • Health Belief Model
  • hereditary hemorrhagic telangiectasia
  • illness representation
  • perceived barriers
  • screening behaviors

ASJC Scopus subject areas

  • Genetics(clinical)


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