Education and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome in Norway, a questionnaire based study
To describe education level and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome, and explore factors related to work participation. Cross-sectional postal survey in 2018. Individuals with molecularly verified diagnosis were recruited through a National Re...
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| Veröffentlicht in: | PloS one 2022-12, Vol.17 (12), p.e0279848-e0279848 |
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| creator | Johansen, Heidi Velvin, Gry Lidal, Ingeborg B |
| description | To describe education level and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome, and explore factors related to work participation.
Cross-sectional postal survey in 2018. Individuals with molecularly verified diagnosis were recruited through a National Resource Centre for Rare Disorders. A study specific questionnaire included topics on disease burden and validated instruments regarding education level, employment, pain, fatigue, psychological distress, and satisfaction with life.
Fifty persons (56% women) aged 18-67 years, participated. Almost 60% reported education level ≤13 years. Two thirds (66%) received disability benefits, 21 (42%) had full-time disability pension. The median age at ending work was 41 years. Full-time employed and students were younger (p = 0.014), less fatigued (p = 0.035), had less sleep problems (p = 0.028) and higher satisfaction with life (p |
| doi_str_mv | 10.1371/journal.pone.0279848 |
| format | Article |
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Cross-sectional postal survey in 2018. Individuals with molecularly verified diagnosis were recruited through a National Resource Centre for Rare Disorders. A study specific questionnaire included topics on disease burden and validated instruments regarding education level, employment, pain, fatigue, psychological distress, and satisfaction with life.
Fifty persons (56% women) aged 18-67 years, participated. Almost 60% reported education level ≤13 years. Two thirds (66%) received disability benefits, 21 (42%) had full-time disability pension. The median age at ending work was 41 years. Full-time employed and students were younger (p = 0.014), less fatigued (p = 0.035), had less sleep problems (p = 0.028) and higher satisfaction with life (p<0.001) than those who received disability pension. A third (32%) were currently or used to be in sedentary work, and 68% currently had or used to be in practical work requiring much standing and walking (23%), much walking and lifting (34%) or heavy manual work (11%).
There is a potential that more adults with these diagnoses can sustain employment for more years. Health and social service follow-up routines and future studies should include details on employment perspectives to reveal those at risk of poor employment and to identify modifiable factors for work participation.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0279848</identifier><identifier>PMID: 36584154</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Adult ; Adults ; Age ; Aneurysms ; Anxiety ; Care and treatment ; Careers ; Connective tissue diseases ; Coronary vessels ; Cross-Sectional Studies ; Disability pensions ; Dissection ; Economic aspects ; Education ; Educational Status ; Ehlers-Danlos Syndrome ; Ehlers-Danlos Syndrome, Type IV ; Employment ; Evaluation ; Fatigue ; Female ; Humans ; Hypertension ; Loeys-Dietz Syndrome ; Male ; Marfan syndrome ; Medical research ; Medicine and Health Sciences ; Medicine, Experimental ; Norway - epidemiology ; Pain ; Participation ; People and Places ; Psychological stress ; Pulmonary eosinophilia ; Quality of life ; Questionnaires ; Research and Analysis Methods ; Sleep disorders ; Social Sciences ; Stress (Psychology) ; Surgery ; Surveys ; Surveys and Questionnaires ; Veins & arteries</subject><ispartof>PloS one, 2022-12, Vol.17 (12), p.e0279848-e0279848</ispartof><rights>Copyright: © 2022 Johansen et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.</rights><rights>COPYRIGHT 2022 Public Library of Science</rights><rights>2022 Johansen 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>2022 Johansen et al 2022 Johansen et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-488e47dab56eace3d50f34bf121177cfb1fe2e69fb4bac01e073798412a7ff93</citedby><cites>FETCH-LOGICAL-c692t-488e47dab56eace3d50f34bf121177cfb1fe2e69fb4bac01e073798412a7ff93</cites><orcidid>0000-0002-1396-6715</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/PMC9803106/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC9803106/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,864,885,2102,2928,23866,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36584154$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Böckerman, Petri</contributor><creatorcontrib>Johansen, Heidi</creatorcontrib><creatorcontrib>Velvin, Gry</creatorcontrib><creatorcontrib>Lidal, Ingeborg B</creatorcontrib><title>Education and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome in Norway, a questionnaire based study</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>To describe education level and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome, and explore factors related to work participation.
Cross-sectional postal survey in 2018. Individuals with molecularly verified diagnosis were recruited through a National Resource Centre for Rare Disorders. A study specific questionnaire included topics on disease burden and validated instruments regarding education level, employment, pain, fatigue, psychological distress, and satisfaction with life.
Fifty persons (56% women) aged 18-67 years, participated. Almost 60% reported education level ≤13 years. Two thirds (66%) received disability benefits, 21 (42%) had full-time disability pension. The median age at ending work was 41 years. Full-time employed and students were younger (p = 0.014), less fatigued (p = 0.035), had less sleep problems (p = 0.028) and higher satisfaction with life (p<0.001) than those who received disability pension. A third (32%) were currently or used to be in sedentary work, and 68% currently had or used to be in practical work requiring much standing and walking (23%), much walking and lifting (34%) or heavy manual work (11%).
There is a potential that more adults with these diagnoses can sustain employment for more years. Health and social service follow-up routines and future studies should include details on employment perspectives to reveal those at risk of poor employment and to identify modifiable factors for work participation.</description><subject>Adult</subject><subject>Adults</subject><subject>Age</subject><subject>Aneurysms</subject><subject>Anxiety</subject><subject>Care and treatment</subject><subject>Careers</subject><subject>Connective tissue diseases</subject><subject>Coronary vessels</subject><subject>Cross-Sectional Studies</subject><subject>Disability pensions</subject><subject>Dissection</subject><subject>Economic aspects</subject><subject>Education</subject><subject>Educational Status</subject><subject>Ehlers-Danlos Syndrome</subject><subject>Ehlers-Danlos Syndrome, Type IV</subject><subject>Employment</subject><subject>Evaluation</subject><subject>Fatigue</subject><subject>Female</subject><subject>Humans</subject><subject>Hypertension</subject><subject>Loeys-Dietz Syndrome</subject><subject>Male</subject><subject>Marfan syndrome</subject><subject>Medical research</subject><subject>Medicine and Health Sciences</subject><subject>Medicine, Experimental</subject><subject>Norway - epidemiology</subject><subject>Pain</subject><subject>Participation</subject><subject>People and Places</subject><subject>Psychological stress</subject><subject>Pulmonary eosinophilia</subject><subject>Quality of life</subject><subject>Questionnaires</subject><subject>Research and Analysis Methods</subject><subject>Sleep disorders</subject><subject>Social Sciences</subject><subject>Stress (Psychology)</subject><subject>Surgery</subject><subject>Surveys</subject><subject>Surveys and Questionnaires</subject><subject>Veins & arteries</subject><issn>1932-6203</issn><issn>1932-6203</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><sourceid>DOA</sourceid><recordid>eNqNk99qFDEUxgdRbK2-gWhAEAV3TSaZfzdCqVULxYIWb8OZzMluSiZpk5nW9S18YzPdbe1KL2QuMiS_852c7-Rk2XNG54xX7P2ZH4MDOz_3Duc0r5pa1A-yXdbwfFbmlD-887-TPYnxjNKC12X5ONvhZVELVojd7PdhNyoYjHcEXEewP7d-1aMbSBxgGCOB3rsFgW60QyRXZliSY4-rOPtocPhF4sp1wfd4HXwJUY0WAjlcWgwJAWd9_MsYR776cAWrdwTIxYhxSuvABCQtROxSyrFbPc0eabARn23Wvez00-HpwZfZ8cnno4P945kqm3yYibpGUXXQFiWCQt4VVHPRapYzVlVKt0xjjmWjW9GCogxpxSePWA6V1g3fy16uZVPBUW7MjDKviqZsmrJmiThaE52HM3keTA9hJT0Yeb3hw0JCGIyyKAvGFVOFqLBmok294IVmtQYQtNV5rpLWh022se2xU8ngAHZLdPvEmaVc-EvZ1JQzWiaBNxuB4K-tk72JCq0Fh35c37tJTaUioa_-Qe-vbkMtIBVgnPYpr5pE5X7FWSV4KSZqfg-Vvg57o9LL0ybtbwW83QpIzIA_hwWMMcqj79_-nz35sc2-vsMuEeywjN6O0xOK26BYgyr4GAPqW5MZldPg3Lghp8GRm8FJYS_uNug26GZS-B-uTRY9</recordid><startdate>20221230</startdate><enddate>20221230</enddate><creator>Johansen, Heidi</creator><creator>Velvin, Gry</creator><creator>Lidal, Ingeborg B</creator><general>Public Library of Science</general><general>Public Library of Science (PLoS)</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>IOV</scope><scope>ISR</scope><scope>3V.</scope><scope>7QG</scope><scope>7QL</scope><scope>7QO</scope><scope>7RV</scope><scope>7SN</scope><scope>7SS</scope><scope>7T5</scope><scope>7TG</scope><scope>7TM</scope><scope>7U9</scope><scope>7X2</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8C1</scope><scope>8FD</scope><scope>8FE</scope><scope>8FG</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABJCF</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ARAPS</scope><scope>ATCPS</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BGLVJ</scope><scope>BHPHI</scope><scope>C1K</scope><scope>CCPQU</scope><scope>D1I</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>H94</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>KB.</scope><scope>KB0</scope><scope>KL.</scope><scope>L6V</scope><scope>LK8</scope><scope>M0K</scope><scope>M0S</scope><scope>M1P</scope><scope>M7N</scope><scope>M7P</scope><scope>M7S</scope><scope>NAPCQ</scope><scope>P5Z</scope><scope>P62</scope><scope>P64</scope><scope>PATMY</scope><scope>PDBOC</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PTHSS</scope><scope>PYCSY</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0002-1396-6715</orcidid></search><sort><creationdate>20221230</creationdate><title>Education and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome in Norway, a questionnaire based study</title><author>Johansen, Heidi ; Velvin, Gry ; Lidal, Ingeborg B</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c692t-488e47dab56eace3d50f34bf121177cfb1fe2e69fb4bac01e073798412a7ff93</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Adult</topic><topic>Adults</topic><topic>Age</topic><topic>Aneurysms</topic><topic>Anxiety</topic><topic>Care and treatment</topic><topic>Careers</topic><topic>Connective tissue diseases</topic><topic>Coronary vessels</topic><topic>Cross-Sectional Studies</topic><topic>Disability pensions</topic><topic>Dissection</topic><topic>Economic aspects</topic><topic>Education</topic><topic>Educational Status</topic><topic>Ehlers-Danlos Syndrome</topic><topic>Ehlers-Danlos Syndrome, Type IV</topic><topic>Employment</topic><topic>Evaluation</topic><topic>Fatigue</topic><topic>Female</topic><topic>Humans</topic><topic>Hypertension</topic><topic>Loeys-Dietz Syndrome</topic><topic>Male</topic><topic>Marfan syndrome</topic><topic>Medical research</topic><topic>Medicine and Health Sciences</topic><topic>Medicine, Experimental</topic><topic>Norway - 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Academic</collection><collection>PubMed Central (Full Participant titles)</collection><collection>DOAJ Directory of Open Access Journals</collection><jtitle>PloS one</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Johansen, Heidi</au><au>Velvin, Gry</au><au>Lidal, Ingeborg B</au><au>Böckerman, Petri</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Education and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome in Norway, a questionnaire based study</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2022-12-30</date><risdate>2022</risdate><volume>17</volume><issue>12</issue><spage>e0279848</spage><epage>e0279848</epage><pages>e0279848-e0279848</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>To describe education level and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome, and explore factors related to work participation.
Cross-sectional postal survey in 2018. Individuals with molecularly verified diagnosis were recruited through a National Resource Centre for Rare Disorders. A study specific questionnaire included topics on disease burden and validated instruments regarding education level, employment, pain, fatigue, psychological distress, and satisfaction with life.
Fifty persons (56% women) aged 18-67 years, participated. Almost 60% reported education level ≤13 years. Two thirds (66%) received disability benefits, 21 (42%) had full-time disability pension. The median age at ending work was 41 years. Full-time employed and students were younger (p = 0.014), less fatigued (p = 0.035), had less sleep problems (p = 0.028) and higher satisfaction with life (p<0.001) than those who received disability pension. A third (32%) were currently or used to be in sedentary work, and 68% currently had or used to be in practical work requiring much standing and walking (23%), much walking and lifting (34%) or heavy manual work (11%).
There is a potential that more adults with these diagnoses can sustain employment for more years. Health and social service follow-up routines and future studies should include details on employment perspectives to reveal those at risk of poor employment and to identify modifiable factors for work participation.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>36584154</pmid><doi>10.1371/journal.pone.0279848</doi><tpages>e0279848</tpages><orcidid>https://orcid.org/0000-0002-1396-6715</orcidid><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; DOAJ Directory of Open Access Journals; Public Library of Science (PLoS) Journals Open Access; EZB-FREE-00999 freely available EZB journals; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Adult Adults Age Aneurysms Anxiety Care and treatment Careers Connective tissue diseases Coronary vessels Cross-Sectional Studies Disability pensions Dissection Economic aspects Education Educational Status Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome, Type IV Employment Evaluation Fatigue Female Humans Hypertension Loeys-Dietz Syndrome Male Marfan syndrome Medical research Medicine and Health Sciences Medicine, Experimental Norway - epidemiology Pain Participation People and Places Psychological stress Pulmonary eosinophilia Quality of life Questionnaires Research and Analysis Methods Sleep disorders Social Sciences Stress (Psychology) Surgery Surveys Surveys and Questionnaires Veins & arteries |
| title | Education and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome in Norway, a questionnaire based study |
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