Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study
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 inte...
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| description | 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.
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.
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.
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. |
| doi_str_mv | 10.1371/journal.pone.0209328 |
| format | Article |
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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.
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.
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.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0209328</identifier><identifier>PMID: 30571778</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Age ; Age related diseases ; Attitudes ; Biology and Life Sciences ; Blindness ; Colorectal cancer ; Communication ; Content analysis ; Cross-Sectional Studies ; Disease ; Disease prevention ; Disease susceptibility ; Education ; Educational programs ; Epidemiology ; Etiology ; Genetic aspects ; Genetic Counseling ; Genetic factors ; Genetic Testing ; Genetics ; Genomes ; Genomics ; Germany ; Health risk assessment ; Health risks ; Heritability ; Hospitals ; Humans ; Inclination ; Industrialized nations ; Interviews as Topic ; Knowledge bases (artificial intelligence) ; Lifestyles ; Macular degeneration ; Macular Degeneration - etiology ; Macular Degeneration - genetics ; Macular Degeneration - prevention & control ; Medical personnel ; Medicine and Health Sciences ; Multifactorial Inheritance ; Ophthalmologists ; Ophthalmologists - education ; Patient Education as Topic ; Patients ; People and Places ; Preventive medicine ; Primary care ; Qualitative Research ; Retina ; Risk ; Risk communication ; Risk Factors ; Services ; Smoking ; Social Sciences ; Sociology ; Tests ; Translational Medical Research</subject><ispartof>PloS one, 2018-12, Vol.13 (12), p.e0209328-e0209328</ispartof><rights>COPYRIGHT 2018 Public Library of Science</rights><rights>2018 Loss et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2018 Loss et al 2018 Loss et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-57ffde47c56611af0d1a8f1d4434ef03ddcacef15685c82944f6a99ecbe360833</citedby><cites>FETCH-LOGICAL-c692t-57ffde47c56611af0d1a8f1d4434ef03ddcacef15685c82944f6a99ecbe360833</cites><orcidid>0000-0001-8223-6137 ; 0000-0002-9811-1002 ; 0000-0002-8808-7723</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6301605/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6301605/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,864,885,2100,2926,23865,27343,27923,27924,33773,53790,53792,79371,79372</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30571778$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>DeAngelis, Margaret M</contributor><creatorcontrib>Loss, Julika</creatorcontrib><creatorcontrib>Müller, Daniel</creatorcontrib><creatorcontrib>Weigl, Johannes</creatorcontrib><creatorcontrib>Helbig, Horst</creatorcontrib><creatorcontrib>Brandl, Caroline</creatorcontrib><creatorcontrib>Heid, Iris M</creatorcontrib><creatorcontrib>Finger, Robert P</creatorcontrib><creatorcontrib>Weber, Bernhard H F</creatorcontrib><creatorcontrib>Curbach, Janina</creatorcontrib><title>Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>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.
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.
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.
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.</description><subject>Age</subject><subject>Age related diseases</subject><subject>Attitudes</subject><subject>Biology and Life Sciences</subject><subject>Blindness</subject><subject>Colorectal cancer</subject><subject>Communication</subject><subject>Content analysis</subject><subject>Cross-Sectional Studies</subject><subject>Disease</subject><subject>Disease prevention</subject><subject>Disease susceptibility</subject><subject>Education</subject><subject>Educational programs</subject><subject>Epidemiology</subject><subject>Etiology</subject><subject>Genetic aspects</subject><subject>Genetic Counseling</subject><subject>Genetic factors</subject><subject>Genetic Testing</subject><subject>Genetics</subject><subject>Genomes</subject><subject>Genomics</subject><subject>Germany</subject><subject>Health risk assessment</subject><subject>Health risks</subject><subject>Heritability</subject><subject>Hospitals</subject><subject>Humans</subject><subject>Inclination</subject><subject>Industrialized nations</subject><subject>Interviews as Topic</subject><subject>Knowledge bases (artificial intelligence)</subject><subject>Lifestyles</subject><subject>Macular degeneration</subject><subject>Macular Degeneration - etiology</subject><subject>Macular Degeneration - genetics</subject><subject>Macular Degeneration - prevention & control</subject><subject>Medical personnel</subject><subject>Medicine and Health Sciences</subject><subject>Multifactorial Inheritance</subject><subject>Ophthalmologists</subject><subject>Ophthalmologists - education</subject><subject>Patient Education as Topic</subject><subject>Patients</subject><subject>People and Places</subject><subject>Preventive medicine</subject><subject>Primary care</subject><subject>Qualitative 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of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study</title><author>Loss, Julika ; Müller, Daniel ; Weigl, Johannes ; Helbig, Horst ; Brandl, Caroline ; Heid, Iris M ; Finger, Robert P ; Weber, Bernhard H F ; Curbach, Janina</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c692t-57ffde47c56611af0d1a8f1d4434ef03ddcacef15685c82944f6a99ecbe360833</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Age</topic><topic>Age related diseases</topic><topic>Attitudes</topic><topic>Biology and Life Sciences</topic><topic>Blindness</topic><topic>Colorectal cancer</topic><topic>Communication</topic><topic>Content analysis</topic><topic>Cross-Sectional Studies</topic><topic>Disease</topic><topic>Disease prevention</topic><topic>Disease susceptibility</topic><topic>Education</topic><topic>Educational 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Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Loss, Julika</au><au>Müller, Daniel</au><au>Weigl, Johannes</au><au>Helbig, Horst</au><au>Brandl, Caroline</au><au>Heid, Iris M</au><au>Finger, Robert P</au><au>Weber, Bernhard H F</au><au>Curbach, Janina</au><au>DeAngelis, Margaret M</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2018-12-20</date><risdate>2018</risdate><volume>13</volume><issue>12</issue><spage>e0209328</spage><epage>e0209328</epage><pages>e0209328-e0209328</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>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.
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.
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.
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.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>30571778</pmid><doi>10.1371/journal.pone.0209328</doi><tpages>e0209328</tpages><orcidid>https://orcid.org/0000-0001-8223-6137</orcidid><orcidid>https://orcid.org/0000-0002-9811-1002</orcidid><orcidid>https://orcid.org/0000-0002-8808-7723</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1932-6203 |
| ispartof | PloS one, 2018-12, Vol.13 (12), p.e0209328-e0209328 |
| issn | 1932-6203 1932-6203 |
| language | eng |
| recordid | cdi_plos_journals_2159332741 |
| source | MEDLINE; DOAJ Directory of Open Access Journals; Sociological Abstracts; Public Library of Science (PLoS); EZB-FREE-00999 freely available EZB journals; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Age Age related diseases Attitudes Biology and Life Sciences Blindness Colorectal cancer Communication Content analysis Cross-Sectional Studies Disease Disease prevention Disease susceptibility Education Educational programs Epidemiology Etiology Genetic aspects Genetic Counseling Genetic factors Genetic Testing Genetics Genomes Genomics Germany Health risk assessment Health risks Heritability Hospitals Humans Inclination Industrialized nations Interviews as Topic Knowledge bases (artificial intelligence) Lifestyles Macular degeneration Macular Degeneration - etiology Macular Degeneration - genetics Macular Degeneration - prevention & control Medical personnel Medicine and Health Sciences Multifactorial Inheritance Ophthalmologists Ophthalmologists - education Patient Education as Topic Patients People and Places Preventive medicine Primary care Qualitative Research Retina Risk Risk communication Risk Factors Services Smoking Social Sciences Sociology Tests Translational Medical Research |
| title | Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study |
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