TY - JOUR
T1 - Health screening behaviors among adults with hereditary hemorrhagic telangiectasia in North America
AU - Baxter, Melanie
AU - Erby, Lori
AU - Roter, Debra
AU - Bernhardt, Barbara A.
AU - Terry, Peter
AU - Guttmacher, Alan
N1 - Publisher Copyright:
© 2016 American College of Medical Genetics and Genomics.
PY - 2017/6/1
Y1 - 2017/6/1
N2 - 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.
AB - 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.
KW - Health Belief Model
KW - hereditary hemorrhagic telangiectasia
KW - illness representation
KW - perceived barriers
KW - screening behaviors
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U2 - 10.1038/gim.2016.161
DO - 10.1038/gim.2016.161
M3 - Article
C2 - 27735923
AN - SCOPUS:85020168482
SN - 1098-3600
VL - 19
SP - 659
EP - 666
JO - Genetics in Medicine
JF - Genetics in Medicine
IS - 6
ER -