Health screening behaviors among adults with hereditary hemorrhagic telangiectasia in North America |
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| Institution: | 1. Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA;2. Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA;3. Division of Translational Medicine and Human Genetics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA;4. Division of Pulmonary and Critical Care Medicine, Johns Hopkins Hospital, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA;5. The Permanent Fund for Vermont’s Children, Burlington, Vermont, USA;6. Current address: GeneDx, Elmwood Park, New Jersey, USA |
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| Abstract: | PurposeThis study aimed to identify factors that influence screening behaviors of adults with hereditary hemorrhagic telangiectasia (HHT).MethodsParticipants 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.ResultsA 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.ConclusionOur 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.Genet Med advance online publication 13 October 2016 |
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