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

<h4>Background</h4>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 t...

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Main Authors: Julika Loss, Daniel Müller, Johannes Weigl, Horst Helbig, Caroline Brandl, Iris M Heid, Robert P Finger, Bernhard H F Weber, Janina Curbach
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2018-01-01
Series:PLoS ONE
Online Access:https://doi.org/10.1371/journal.pone.0209328
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author Julika Loss
Daniel Müller
Johannes Weigl
Horst Helbig
Caroline Brandl
Iris M Heid
Robert P Finger
Bernhard H F Weber
Janina Curbach
author_facet Julika Loss
Daniel Müller
Johannes Weigl
Horst Helbig
Caroline Brandl
Iris M Heid
Robert P Finger
Bernhard H F Weber
Janina Curbach
author_sort Julika Loss
collection DOAJ
description <h4>Background</h4>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 ophthalmologists' view on AMD genetics, and their inclination towards communicating genetic risks to patients.<h4>Methods</h4>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.<h4>Results</h4>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 individuals' high genetic risk for prevention, e.g. screening or lifestyle modifications in persons with adverse genetic profile, was rated low.<h4>Conclusion</h4>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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spelling doaj.art-4c28e39022b4423493333d77ee3239ed2022-12-22T04:04:54ZengPublic Library of Science (PLoS)PLoS ONE1932-62032018-01-011312e020932810.1371/journal.pone.0209328Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.Julika LossDaniel MüllerJohannes WeiglHorst HelbigCaroline BrandlIris M HeidRobert P FingerBernhard H F WeberJanina Curbach<h4>Background</h4>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 ophthalmologists' view on AMD genetics, and their inclination towards communicating genetic risks to patients.<h4>Methods</h4>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.<h4>Results</h4>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 individuals' high genetic risk for prevention, e.g. screening or lifestyle modifications in persons with adverse genetic profile, was rated low.<h4>Conclusion</h4>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.https://doi.org/10.1371/journal.pone.0209328
spellingShingle Julika Loss
Daniel Müller
Johannes Weigl
Horst Helbig
Caroline Brandl
Iris M Heid
Robert P Finger
Bernhard H F Weber
Janina Curbach
Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.
PLoS ONE
title Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.
title_full Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.
title_fullStr Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.
title_full_unstemmed Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.
title_short Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.
title_sort views of ophthalmologists on the genetics of age related macular degeneration results of a qualitative study
url https://doi.org/10.1371/journal.pone.0209328
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