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Loss, Julika ; Müller, Daniel ; Weigl, Johannes ; Helbig, Horst ; Brandl, Caroline ; Heid, Iris M. ; Finger, Robert P. ; Weber, Bernhard H. F. ; Curbach, Janina

Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study

Loss, Julika , Müller, Daniel, Weigl, Johannes, Helbig, Horst, Brandl, Caroline , Heid, Iris M., Finger, Robert P., Weber, Bernhard H. F. and Curbach, Janina (2018) Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study. PLOS ONE 13 (12), e0209328.

Date of publication of this fulltext: 24 Jan 2019 13:53
Article
DOI to cite this document: 10.5283/epub.38267


Abstract

Background Age-related macular degeneration (AMD) is the leading cause of blindness in industrialized countries. It is a multifactorial disease of the retina modified by environmental/individual (e.g. smoking) and genetic factors. 34 independent genomic loci are associated with the risk to develop AMD; an interaction between smoking and genetics is currently investigated. It is unclear how the ...

Background Age-related macular degeneration (AMD) is the leading cause of blindness in industrialized countries. It is a multifactorial disease of the retina modified by environmental/individual (e.g. smoking) and genetic factors. 34 independent genomic loci are associated with the risk to develop AMD; an interaction between smoking and genetics is currently investigated. It is unclear how the knowledge on the strong genetic component has entered the knowledge base of practicing ophthalmologists, and how they inform and counsel their (AMD) patients about it. In this study, we explore the ophthalmologist's view on AMD genetics, and their inclination towards communicating genetic risks to patients. Methods We recruited a purposive sample of thirty German ophthalmologists (office based: n = 15, hospital employees: n = 15, f:8/30), who took part in a recorded semi-standardized interview. Transcripts were analyzed using content analysis. Results The majority of office-based ophthalmologists claimed to be unfamiliar with genetics of AMD, in contrast to hospital-affiliated ophthalmologists. Both office and hospital ophthalmologists were convinced that genetics lacks practical relevance in everyday patient care. Many withhold information on heritability or genetic background of AMD from patients and their relatives, for fear of unsettling those individuals. The relevance of the genetic component of AMD or an individual's high genetic risk for prevention, e.g. screening or lifestyle modifications in persons with adverse genetic profile, was rated low. Conclusion Developing genetic educational programs tailored to the routine care of ophthalmologists may be indicated, as well as a better two-way communication between research and practice. Exploring patient views about their expectations to being informed about genetic disease etiology, or about their individual risk, would help inform communication strategies.



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Details

Item typeArticle
Journal or Publication TitlePLOS ONE
Publisher:PLOS
Place of Publication:SAN FRANCISCO
Volume:13
Number of Issue or Book Chapter:12
Page Range:e0209328
Date20 December 2018
InstitutionsMedicine > Institut für Epidemiologie und Präventivmedizin > Medical Sociology
Identification Number
ValueType
10.1371/journal.pone.0209328DOI
KeywordsHEALTH-CARE; PREVALENCE; KNOWLEDGE; SUSCEPTIBILITY; EPIDEMIOLOGY; ACCELERATE; ATTITUDES; EDUCATION; SMOKING; US;
Dewey Decimal Classification600 Technology > 610 Medical sciences Medicine
StatusPublished
RefereedYes, this version has been refereed
Created at the University of RegensburgYes
URN of the UB Regensburgurn:nbn:de:bvb:355-epub-382677
Item ID38267

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