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Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study
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...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6301605/ https://www.ncbi.nlm.nih.gov/pubmed/30571778 http://dx.doi.org/10.1371/journal.pone.0209328 |
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author | Loss, Julika Müller, Daniel Weigl, Johannes Helbig, Horst Brandl, Caroline Heid, Iris M. Finger, Robert P. Weber, Bernhard H. F. Curbach, Janina |
author_facet | Loss, Julika Müller, Daniel Weigl, Johannes Helbig, Horst Brandl, Caroline Heid, Iris M. Finger, Robert P. Weber, Bernhard H. F. Curbach, Janina |
author_sort | Loss, Julika |
collection | PubMed |
description | 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 ophthalmologists’ 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 individuals’ 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. |
format | Online Article Text |
id | pubmed-6301605 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-63016052018-12-31 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. Curbach, Janina PLoS One Research Article 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 ophthalmologists’ 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 individuals’ 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. Public Library of Science 2018-12-20 /pmc/articles/PMC6301605/ /pubmed/30571778 http://dx.doi.org/10.1371/journal.pone.0209328 Text en © 2018 Loss et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Research Article 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 |
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 |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6301605/ https://www.ncbi.nlm.nih.gov/pubmed/30571778 http://dx.doi.org/10.1371/journal.pone.0209328 |
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