Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder
There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such...
Gespeichert in:
| Veröffentlicht in: | Journal of autism and developmental disorders 2021-04, Vol.51 (4), p.1201-1209 |
|---|---|
| Hauptverfasser: | , , , , , |
| Format: | Artikel |
| Sprache: | eng |
| Schlagworte: | |
| Online-Zugang: | Volltext |
| Tags: |
Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
|
| container_end_page | 1209 |
|---|---|
| container_issue | 4 |
| container_start_page | 1201 |
| container_title | Journal of autism and developmental disorders |
| container_volume | 51 |
| creator | Hendel, Yonah Meiri, Gal Flusser, Hagit Michaelovski, Analya Dinstein, Ilan Menashe, Idan |
| description | There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such genetic testing is funded by the government. We found that only one-third of these families completed post-diagnosis genetic testing for their child. The main factor influencing compliance was the doctor′s recommendation (OR 11.6; 95% CI 3.2–42.4; p 50% of the non-compliant families reported that genetic testing was irrelevant to them. Our findings highlight the importance of providing clear recommendations and explanations regarding the benefits and relevance of post-diagnosis genetic testing for children with ASD. |
| doi_str_mv | 10.1007/s10803-020-04589-y |
| format | Article |
| fullrecord | <record><control><sourceid>gale_proqu</sourceid><recordid>TN_cdi_proquest_miscellaneous_2423067136</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><galeid>A656117239</galeid><ericid>EJ1289661</ericid><sourcerecordid>A656117239</sourcerecordid><originalsourceid>FETCH-LOGICAL-c536t-cd4d6f295357f7fe36034deb7e0c16da828b130fcfc2c9b3e645fc53dcd901c83</originalsourceid><addsrcrecordid>eNp9kl9rFDEUxYModq1-AUEZ6Is-TM2fSWbmcVm7tVIQbH0O2eRmmjKTrMkMut_etFNbVhbJQyDnd24uh4PQW4JPCcb1p0Rwg1mJKS5xxZu23D1DC8JrVrKK0edogYmgJaO8PkKvUrrFGLcNpS_REaOCk5pWC9SvlR5DTMXSWtCj812xVoPrd8UqDNveKa-h-OXGm-IcPIxOF9eQ7rFgi9WN600EX3x2qvMhgZnR5TS6NBRX2zwxTkOWU4gG4mv0wqo-wZuH-xj9WJ9dr76Ul9_OL1bLy1JzJsZSm8oIS1vOeG1rC0xgVhnY1IA1EUY1tNkQhq22mup2w0BU3Gar0abFRDfsGH2Y525j-DnlfeXgkoa-Vx7ClCStKMOiJkxk9OQf9DZM0eftJOWYcSpazp-oTvUgnbdhjErfDZVLwQXJWbI2U-UBqsu5RdUHD9bl5z3-9ACfj4HB6YOGj3uGzIzwe-zUlJK8uPq-z9KZ1TGkFMHKbXSDijtJsLyrj5zrI3N95H195C6b3j-kMW0GMI-Wv33JwLsZgOj0o3z2ldCmFYJknc16yprvID7F-Z9v_wD6pteV</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2503526955</pqid></control><display><type>article</type><title>Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>Education Source</source><source>SpringerLink Journals - AutoHoldings</source><creator>Hendel, Yonah ; Meiri, Gal ; Flusser, Hagit ; Michaelovski, Analya ; Dinstein, Ilan ; Menashe, Idan</creator><creatorcontrib>Hendel, Yonah ; Meiri, Gal ; Flusser, Hagit ; Michaelovski, Analya ; Dinstein, Ilan ; Menashe, Idan</creatorcontrib><description>There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such genetic testing is funded by the government. We found that only one-third of these families completed post-diagnosis genetic testing for their child. The main factor influencing compliance was the doctor′s recommendation (OR 11.6; 95% CI 3.2–42.4; p < 0.001). Furthermore, > 50% of the non-compliant families reported that genetic testing was irrelevant to them. Our findings highlight the importance of providing clear recommendations and explanations regarding the benefits and relevance of post-diagnosis genetic testing for children with ASD.</description><identifier>ISSN: 0162-3257</identifier><identifier>EISSN: 1573-3432</identifier><identifier>DOI: 10.1007/s10803-020-04589-y</identifier><identifier>PMID: 32651724</identifier><language>eng</language><publisher>New York: Springer US</publisher><subject>Autism ; Autistic children ; Behavioral Science and Psychology ; Child and School Psychology ; Children ; Clinical Diagnosis ; Compliance ; Compliance (Psychology) ; Demographic aspects ; Diagnosis ; Diagnostic tests ; Family Attitudes ; Forecasts and trends ; Foreign Countries ; Genetic aspects ; Genetic screening ; Genetic testing ; Genetics ; Medical diagnosis ; Neurosciences ; Original Paper ; Patient compliance ; Pediatrics ; Pervasive Developmental Disorders ; Physicians ; Psychology ; Public Health ; Risk factors ; Testing</subject><ispartof>Journal of autism and developmental disorders, 2021-04, Vol.51 (4), p.1201-1209</ispartof><rights>Springer Science+Business Media, LLC, part of Springer Nature 2020</rights><rights>COPYRIGHT 2021 Springer</rights><rights>Springer Science+Business Media, LLC, part of Springer Nature 2020.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c536t-cd4d6f295357f7fe36034deb7e0c16da828b130fcfc2c9b3e645fc53dcd901c83</citedby><cites>FETCH-LOGICAL-c536t-cd4d6f295357f7fe36034deb7e0c16da828b130fcfc2c9b3e645fc53dcd901c83</cites><orcidid>0000-0003-1961-1461</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10803-020-04589-y$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10803-020-04589-y$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,776,780,12825,27901,27902,30976,41464,42533,51294</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ1289661$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32651724$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hendel, Yonah</creatorcontrib><creatorcontrib>Meiri, Gal</creatorcontrib><creatorcontrib>Flusser, Hagit</creatorcontrib><creatorcontrib>Michaelovski, Analya</creatorcontrib><creatorcontrib>Dinstein, Ilan</creatorcontrib><creatorcontrib>Menashe, Idan</creatorcontrib><title>Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder</title><title>Journal of autism and developmental disorders</title><addtitle>J Autism Dev Disord</addtitle><addtitle>J Autism Dev Disord</addtitle><description>There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such genetic testing is funded by the government. We found that only one-third of these families completed post-diagnosis genetic testing for their child. The main factor influencing compliance was the doctor′s recommendation (OR 11.6; 95% CI 3.2–42.4; p < 0.001). Furthermore, > 50% of the non-compliant families reported that genetic testing was irrelevant to them. Our findings highlight the importance of providing clear recommendations and explanations regarding the benefits and relevance of post-diagnosis genetic testing for children with ASD.</description><subject>Autism</subject><subject>Autistic children</subject><subject>Behavioral Science and Psychology</subject><subject>Child and School Psychology</subject><subject>Children</subject><subject>Clinical Diagnosis</subject><subject>Compliance</subject><subject>Compliance (Psychology)</subject><subject>Demographic aspects</subject><subject>Diagnosis</subject><subject>Diagnostic tests</subject><subject>Family Attitudes</subject><subject>Forecasts and trends</subject><subject>Foreign Countries</subject><subject>Genetic aspects</subject><subject>Genetic screening</subject><subject>Genetic testing</subject><subject>Genetics</subject><subject>Medical diagnosis</subject><subject>Neurosciences</subject><subject>Original Paper</subject><subject>Patient compliance</subject><subject>Pediatrics</subject><subject>Pervasive Developmental Disorders</subject><subject>Physicians</subject><subject>Psychology</subject><subject>Public Health</subject><subject>Risk factors</subject><subject>Testing</subject><issn>0162-3257</issn><issn>1573-3432</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><sourceid>8G5</sourceid><sourceid>BENPR</sourceid><sourceid>GUQSH</sourceid><sourceid>M2O</sourceid><recordid>eNp9kl9rFDEUxYModq1-AUEZ6Is-TM2fSWbmcVm7tVIQbH0O2eRmmjKTrMkMut_etFNbVhbJQyDnd24uh4PQW4JPCcb1p0Rwg1mJKS5xxZu23D1DC8JrVrKK0edogYmgJaO8PkKvUrrFGLcNpS_REaOCk5pWC9SvlR5DTMXSWtCj812xVoPrd8UqDNveKa-h-OXGm-IcPIxOF9eQ7rFgi9WN600EX3x2qvMhgZnR5TS6NBRX2zwxTkOWU4gG4mv0wqo-wZuH-xj9WJ9dr76Ul9_OL1bLy1JzJsZSm8oIS1vOeG1rC0xgVhnY1IA1EUY1tNkQhq22mup2w0BU3Gar0abFRDfsGH2Y525j-DnlfeXgkoa-Vx7ClCStKMOiJkxk9OQf9DZM0eftJOWYcSpazp-oTvUgnbdhjErfDZVLwQXJWbI2U-UBqsu5RdUHD9bl5z3-9ACfj4HB6YOGj3uGzIzwe-zUlJK8uPq-z9KZ1TGkFMHKbXSDijtJsLyrj5zrI3N95H195C6b3j-kMW0GMI-Wv33JwLsZgOj0o3z2ldCmFYJknc16yprvID7F-Z9v_wD6pteV</recordid><startdate>20210401</startdate><enddate>20210401</enddate><creator>Hendel, Yonah</creator><creator>Meiri, Gal</creator><creator>Flusser, Hagit</creator><creator>Michaelovski, Analya</creator><creator>Dinstein, Ilan</creator><creator>Menashe, Idan</creator><general>Springer US</general><general>Springer</general><general>Springer Nature B.V</general><scope>7SW</scope><scope>BJH</scope><scope>BNH</scope><scope>BNI</scope><scope>BNJ</scope><scope>BNO</scope><scope>ERI</scope><scope>PET</scope><scope>REK</scope><scope>WWN</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>ISR</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7TK</scope><scope>7X7</scope><scope>7XB</scope><scope>88B</scope><scope>88E</scope><scope>88G</scope><scope>88J</scope><scope>8A4</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8G5</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>CJNVE</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>GUQSH</scope><scope>HEHIP</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0P</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2O</scope><scope>M2R</scope><scope>M2S</scope><scope>MBDVC</scope><scope>NAPCQ</scope><scope>PQEDU</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0003-1961-1461</orcidid></search><sort><creationdate>20210401</creationdate><title>Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder</title><author>Hendel, Yonah ; Meiri, Gal ; Flusser, Hagit ; Michaelovski, Analya ; Dinstein, Ilan ; Menashe, Idan</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c536t-cd4d6f295357f7fe36034deb7e0c16da828b130fcfc2c9b3e645fc53dcd901c83</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Autism</topic><topic>Autistic children</topic><topic>Behavioral Science and Psychology</topic><topic>Child and School Psychology</topic><topic>Children</topic><topic>Clinical Diagnosis</topic><topic>Compliance</topic><topic>Compliance (Psychology)</topic><topic>Demographic aspects</topic><topic>Diagnosis</topic><topic>Diagnostic tests</topic><topic>Family Attitudes</topic><topic>Forecasts and trends</topic><topic>Foreign Countries</topic><topic>Genetic aspects</topic><topic>Genetic screening</topic><topic>Genetic testing</topic><topic>Genetics</topic><topic>Medical diagnosis</topic><topic>Neurosciences</topic><topic>Original Paper</topic><topic>Patient compliance</topic><topic>Pediatrics</topic><topic>Pervasive Developmental Disorders</topic><topic>Physicians</topic><topic>Psychology</topic><topic>Public Health</topic><topic>Risk factors</topic><topic>Testing</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hendel, Yonah</creatorcontrib><creatorcontrib>Meiri, Gal</creatorcontrib><creatorcontrib>Flusser, Hagit</creatorcontrib><creatorcontrib>Michaelovski, Analya</creatorcontrib><creatorcontrib>Dinstein, Ilan</creatorcontrib><creatorcontrib>Menashe, Idan</creatorcontrib><collection>ERIC</collection><collection>ERIC (Ovid)</collection><collection>ERIC</collection><collection>ERIC</collection><collection>ERIC (Legacy Platform)</collection><collection>ERIC( SilverPlatter )</collection><collection>ERIC</collection><collection>ERIC PlusText (Legacy Platform)</collection><collection>Education Resources Information Center (ERIC)</collection><collection>ERIC</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Gale In Context: Science</collection><collection>ProQuest Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Nursing & Allied Health Database</collection><collection>Neurosciences Abstracts</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Education Database (Alumni Edition)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>Social Science Database (Alumni Edition)</collection><collection>Education Periodicals</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>Research Library (Alumni Edition)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>Social Science Premium Collection</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Education Collection</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Research Library Prep</collection><collection>Sociology Collection</collection><collection>Consumer Health Database (Alumni Edition)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Education Database</collection><collection>Consumer Health Database</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Psychology</collection><collection>Research Library</collection><collection>Social Science Database</collection><collection>Sociology Database</collection><collection>Research Library (Corporate)</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest One Education</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of autism and developmental disorders</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hendel, Yonah</au><au>Meiri, Gal</au><au>Flusser, Hagit</au><au>Michaelovski, Analya</au><au>Dinstein, Ilan</au><au>Menashe, Idan</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><ericid>EJ1289661</ericid><atitle>Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder</atitle><jtitle>Journal of autism and developmental disorders</jtitle><stitle>J Autism Dev Disord</stitle><addtitle>J Autism Dev Disord</addtitle><date>2021-04-01</date><risdate>2021</risdate><volume>51</volume><issue>4</issue><spage>1201</spage><epage>1209</epage><pages>1201-1209</pages><issn>0162-3257</issn><eissn>1573-3432</eissn><abstract>There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such genetic testing is funded by the government. We found that only one-third of these families completed post-diagnosis genetic testing for their child. The main factor influencing compliance was the doctor′s recommendation (OR 11.6; 95% CI 3.2–42.4; p < 0.001). Furthermore, > 50% of the non-compliant families reported that genetic testing was irrelevant to them. Our findings highlight the importance of providing clear recommendations and explanations regarding the benefits and relevance of post-diagnosis genetic testing for children with ASD.</abstract><cop>New York</cop><pub>Springer US</pub><pmid>32651724</pmid><doi>10.1007/s10803-020-04589-y</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0003-1961-1461</orcidid></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0162-3257 |
| ispartof | Journal of autism and developmental disorders, 2021-04, Vol.51 (4), p.1201-1209 |
| issn | 0162-3257 1573-3432 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_2423067136 |
| source | Applied Social Sciences Index & Abstracts (ASSIA); Education Source; SpringerLink Journals - AutoHoldings |
| subjects | Autism Autistic children Behavioral Science and Psychology Child and School Psychology Children Clinical Diagnosis Compliance Compliance (Psychology) Demographic aspects Diagnosis Diagnostic tests Family Attitudes Forecasts and trends Foreign Countries Genetic aspects Genetic screening Genetic testing Genetics Medical diagnosis Neurosciences Original Paper Patient compliance Pediatrics Pervasive Developmental Disorders Physicians Psychology Public Health Risk factors Testing |
| title | Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-02-08T10%3A20%3A12IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-gale_proqu&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Factors%20Affecting%20Family%20Compliance%20with%20Genetic%20Testing%20of%20Children%20Diagnosed%20with%20Autism%20Spectrum%20Disorder&rft.jtitle=Journal%20of%20autism%20and%20developmental%20disorders&rft.au=Hendel,%20Yonah&rft.date=2021-04-01&rft.volume=51&rft.issue=4&rft.spage=1201&rft.epage=1209&rft.pages=1201-1209&rft.issn=0162-3257&rft.eissn=1573-3432&rft_id=info:doi/10.1007/s10803-020-04589-y&rft_dat=%3Cgale_proqu%3EA656117239%3C/gale_proqu%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=2503526955&rft_id=info:pmid/32651724&rft_galeid=A656117239&rft_ericid=EJ1289661&rfr_iscdi=true |