Caregiver knowledge of obstructive sleep apnoea in Down syndrome
Background Down syndrome (DS) population has a very high prevalence of obstructive sleep apnoea (OSA), but this remains underdiagnosed. Hence, we aimed to evaluate caregiver's knowledge of OSA and related sociodemographic factors that could contribute to OSA screening patterns in this populatio...
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| Veröffentlicht in: | Journal of intellectual disability research 2023-01, Vol.67 (1), p.77-88 |
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| creator | Giménez, S. Tapia, I. E. Fortea, J. Levedowski, D. Osorio, R. Hendrix, J. Hillerstrom, H. |
| description | Background
Down syndrome (DS) population has a very high prevalence of obstructive sleep apnoea (OSA), but this remains underdiagnosed. Hence, we aimed to evaluate caregiver's knowledge of OSA and related sociodemographic factors that could contribute to OSA screening patterns in this population.
Methods
An online survey though the LuMind IDSC Foundation focused on OSA diagnosis, treatments and the number of sleep studies performed. Data were compared between subjects born before and after the American Academy of Pediatrics (AAP) recommendations for OSA screening.
Results
Of the caregivers, 724 (parents 96.3%), responded to the survey. The median [interquartile (IQR)] age of the subjects with DS was 12 [20;7] years. The majority (84.3%) had sleep apnoea diagnosis, and half of them were initially referred for a sleep study due to disturbed sleep symptoms. Only 58.7% of the responders were aware of the AAP recommendations. This was linked to higher socioeconomic and/or educational level and to an earlier OSA diagnosis. The median (IQR) age of OSA diagnosis was lowered after the AAP guidelines publication compared with before its publication (3 [4;2] years vs. 10 [18;5] years, P |
| doi_str_mv | 10.1111/jir.12990 |
| format | Article |
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Down syndrome (DS) population has a very high prevalence of obstructive sleep apnoea (OSA), but this remains underdiagnosed. Hence, we aimed to evaluate caregiver's knowledge of OSA and related sociodemographic factors that could contribute to OSA screening patterns in this population.
Methods
An online survey though the LuMind IDSC Foundation focused on OSA diagnosis, treatments and the number of sleep studies performed. Data were compared between subjects born before and after the American Academy of Pediatrics (AAP) recommendations for OSA screening.
Results
Of the caregivers, 724 (parents 96.3%), responded to the survey. The median [interquartile (IQR)] age of the subjects with DS was 12 [20;7] years. The majority (84.3%) had sleep apnoea diagnosis, and half of them were initially referred for a sleep study due to disturbed sleep symptoms. Only 58.7% of the responders were aware of the AAP recommendations. This was linked to higher socioeconomic and/or educational level and to an earlier OSA diagnosis. The median (IQR) age of OSA diagnosis was lowered after the AAP guidelines publication compared with before its publication (3 [4;2] years vs. 10 [18;5] years, P < 0.000). Adenotonsillectomy (81.9%) and continuous positive airway pressure (61.5%) were the most commonly prescribed treatments. Few had discussed other new therapies such as hypoglossal nerve stimulation (16.0%). Only 16.0% of the subjects repeated the sleep study to monitor OSA with ageing, and 30.2% had to wait more than 4 years between studies.
Conclusions
This study reinforces the need to improve OSA knowledge of caregivers and clinicians of individuals with DS to promote an earlier diagnosis and optimal treatment of OSA in this population.</description><identifier>ISSN: 0964-2633</identifier><identifier>EISSN: 1365-2788</identifier><identifier>DOI: 10.1111/jir.12990</identifier><identifier>PMID: 36416001</identifier><language>eng</language><publisher>England: Wiley Subscription Services, Inc</publisher><subject>Academic achievement ; Aging ; Between-subjects design ; Caregivers ; Child ; Child, Preschool ; Down syndrome ; Down Syndrome - complications ; Down Syndrome - therapy ; Humans ; Medical diagnosis ; Medical screening ; Nerve stimulation ; Obstructive sleep apnea ; Obstructive sleep apnoea ; Online Surveys ; Pediatrics ; Polls & surveys ; Polysomnography ; Prevalence ; Sleep ; Sleep apnea ; Sleep Apnea, Obstructive - diagnosis ; Sleep Apnea, Obstructive - epidemiology ; Sleep Apnea, Obstructive - therapy ; Sleep disorders ; Sleep studies ; Sociodemographics</subject><ispartof>Journal of intellectual disability research, 2023-01, Vol.67 (1), p.77-88</ispartof><rights>2022 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.</rights><rights>2023 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c2830-a6cf33131d746e404f688fc92d0854c941c66f2d47f4075b04231265541cf59e3</citedby><cites>FETCH-LOGICAL-c2830-a6cf33131d746e404f688fc92d0854c941c66f2d47f4075b04231265541cf59e3</cites><orcidid>0000-0001-8031-2319</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fjir.12990$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fjir.12990$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27901,27902,30976,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36416001$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Giménez, S.</creatorcontrib><creatorcontrib>Tapia, I. E.</creatorcontrib><creatorcontrib>Fortea, J.</creatorcontrib><creatorcontrib>Levedowski, D.</creatorcontrib><creatorcontrib>Osorio, R.</creatorcontrib><creatorcontrib>Hendrix, J.</creatorcontrib><creatorcontrib>Hillerstrom, H.</creatorcontrib><title>Caregiver knowledge of obstructive sleep apnoea in Down syndrome</title><title>Journal of intellectual disability research</title><addtitle>J Intellect Disabil Res</addtitle><description>Background
Down syndrome (DS) population has a very high prevalence of obstructive sleep apnoea (OSA), but this remains underdiagnosed. Hence, we aimed to evaluate caregiver's knowledge of OSA and related sociodemographic factors that could contribute to OSA screening patterns in this population.
Methods
An online survey though the LuMind IDSC Foundation focused on OSA diagnosis, treatments and the number of sleep studies performed. Data were compared between subjects born before and after the American Academy of Pediatrics (AAP) recommendations for OSA screening.
Results
Of the caregivers, 724 (parents 96.3%), responded to the survey. The median [interquartile (IQR)] age of the subjects with DS was 12 [20;7] years. The majority (84.3%) had sleep apnoea diagnosis, and half of them were initially referred for a sleep study due to disturbed sleep symptoms. Only 58.7% of the responders were aware of the AAP recommendations. This was linked to higher socioeconomic and/or educational level and to an earlier OSA diagnosis. The median (IQR) age of OSA diagnosis was lowered after the AAP guidelines publication compared with before its publication (3 [4;2] years vs. 10 [18;5] years, P < 0.000). Adenotonsillectomy (81.9%) and continuous positive airway pressure (61.5%) were the most commonly prescribed treatments. Few had discussed other new therapies such as hypoglossal nerve stimulation (16.0%). Only 16.0% of the subjects repeated the sleep study to monitor OSA with ageing, and 30.2% had to wait more than 4 years between studies.
Conclusions
This study reinforces the need to improve OSA knowledge of caregivers and clinicians of individuals with DS to promote an earlier diagnosis and optimal treatment of OSA in this population.</description><subject>Academic achievement</subject><subject>Aging</subject><subject>Between-subjects design</subject><subject>Caregivers</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Down syndrome</subject><subject>Down Syndrome - complications</subject><subject>Down Syndrome - therapy</subject><subject>Humans</subject><subject>Medical diagnosis</subject><subject>Medical screening</subject><subject>Nerve stimulation</subject><subject>Obstructive sleep apnea</subject><subject>Obstructive sleep apnoea</subject><subject>Online Surveys</subject><subject>Pediatrics</subject><subject>Polls & surveys</subject><subject>Polysomnography</subject><subject>Prevalence</subject><subject>Sleep</subject><subject>Sleep apnea</subject><subject>Sleep Apnea, Obstructive - diagnosis</subject><subject>Sleep Apnea, Obstructive - epidemiology</subject><subject>Sleep Apnea, Obstructive - therapy</subject><subject>Sleep disorders</subject><subject>Sleep studies</subject><subject>Sociodemographics</subject><issn>0964-2633</issn><issn>1365-2788</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp10E1Lw0AQBuBFFFurB_-ABLzoIXb2I5vkptSvSkEQPYd0M1tSk2zcbSz9925N9SA4lznMw8vwEnJK4Yr6GS9Le0VZmsIeGVIuo5DFSbJPhpBKETLJ-YAcObcEAEmFPCQDLgWVAHRIrie5xUX5iTZ4b8y6wmKBgdGBmbuV7dTKXwJXIbZB3jYG86BsgluzbgK3aQprajwmBzqvHJ7s9oi83d-9Th7D2fPDdHIzCxVLOIS5VJpzymkRC4kChJZJolXKCkgioVJBlZSaFSLWAuJoDoJxymQU-YOOUuQjctHnttZ8dOhWWV06hVWVN2g6l7GYp4IDhdTT8z90aTrb-O-8irgQDNhWXfZKWeOcRZ21tqxzu8koZNtaM19r9l2rt2e7xG5eY_Erf3r0YNyDdVnh5v-k7Gn60kd-ARacfsU</recordid><startdate>202301</startdate><enddate>202301</enddate><creator>Giménez, S.</creator><creator>Tapia, I. E.</creator><creator>Fortea, J.</creator><creator>Levedowski, D.</creator><creator>Osorio, R.</creator><creator>Hendrix, J.</creator><creator>Hillerstrom, H.</creator><general>Wiley Subscription Services, Inc</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>7QJ</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-8031-2319</orcidid></search><sort><creationdate>202301</creationdate><title>Caregiver knowledge of obstructive sleep apnoea in Down syndrome</title><author>Giménez, S. ; Tapia, I. E. ; Fortea, J. ; Levedowski, D. ; Osorio, R. ; Hendrix, J. ; Hillerstrom, H.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c2830-a6cf33131d746e404f688fc92d0854c941c66f2d47f4075b04231265541cf59e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Academic achievement</topic><topic>Aging</topic><topic>Between-subjects design</topic><topic>Caregivers</topic><topic>Child</topic><topic>Child, Preschool</topic><topic>Down syndrome</topic><topic>Down Syndrome - complications</topic><topic>Down Syndrome - therapy</topic><topic>Humans</topic><topic>Medical diagnosis</topic><topic>Medical screening</topic><topic>Nerve stimulation</topic><topic>Obstructive sleep apnea</topic><topic>Obstructive sleep apnoea</topic><topic>Online Surveys</topic><topic>Pediatrics</topic><topic>Polls & surveys</topic><topic>Polysomnography</topic><topic>Prevalence</topic><topic>Sleep</topic><topic>Sleep apnea</topic><topic>Sleep Apnea, Obstructive - diagnosis</topic><topic>Sleep Apnea, Obstructive - epidemiology</topic><topic>Sleep Apnea, Obstructive - therapy</topic><topic>Sleep disorders</topic><topic>Sleep studies</topic><topic>Sociodemographics</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Giménez, S.</creatorcontrib><creatorcontrib>Tapia, I. E.</creatorcontrib><creatorcontrib>Fortea, J.</creatorcontrib><creatorcontrib>Levedowski, D.</creatorcontrib><creatorcontrib>Osorio, R.</creatorcontrib><creatorcontrib>Hendrix, J.</creatorcontrib><creatorcontrib>Hillerstrom, H.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of intellectual disability research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Giménez, S.</au><au>Tapia, I. E.</au><au>Fortea, J.</au><au>Levedowski, D.</au><au>Osorio, R.</au><au>Hendrix, J.</au><au>Hillerstrom, H.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Caregiver knowledge of obstructive sleep apnoea in Down syndrome</atitle><jtitle>Journal of intellectual disability research</jtitle><addtitle>J Intellect Disabil Res</addtitle><date>2023-01</date><risdate>2023</risdate><volume>67</volume><issue>1</issue><spage>77</spage><epage>88</epage><pages>77-88</pages><issn>0964-2633</issn><eissn>1365-2788</eissn><abstract>Background
Down syndrome (DS) population has a very high prevalence of obstructive sleep apnoea (OSA), but this remains underdiagnosed. Hence, we aimed to evaluate caregiver's knowledge of OSA and related sociodemographic factors that could contribute to OSA screening patterns in this population.
Methods
An online survey though the LuMind IDSC Foundation focused on OSA diagnosis, treatments and the number of sleep studies performed. Data were compared between subjects born before and after the American Academy of Pediatrics (AAP) recommendations for OSA screening.
Results
Of the caregivers, 724 (parents 96.3%), responded to the survey. The median [interquartile (IQR)] age of the subjects with DS was 12 [20;7] years. The majority (84.3%) had sleep apnoea diagnosis, and half of them were initially referred for a sleep study due to disturbed sleep symptoms. Only 58.7% of the responders were aware of the AAP recommendations. This was linked to higher socioeconomic and/or educational level and to an earlier OSA diagnosis. The median (IQR) age of OSA diagnosis was lowered after the AAP guidelines publication compared with before its publication (3 [4;2] years vs. 10 [18;5] years, P < 0.000). Adenotonsillectomy (81.9%) and continuous positive airway pressure (61.5%) were the most commonly prescribed treatments. Few had discussed other new therapies such as hypoglossal nerve stimulation (16.0%). Only 16.0% of the subjects repeated the sleep study to monitor OSA with ageing, and 30.2% had to wait more than 4 years between studies.
Conclusions
This study reinforces the need to improve OSA knowledge of caregivers and clinicians of individuals with DS to promote an earlier diagnosis and optimal treatment of OSA in this population.</abstract><cop>England</cop><pub>Wiley Subscription Services, Inc</pub><pmid>36416001</pmid><doi>10.1111/jir.12990</doi><tpages>12</tpages><orcidid>https://orcid.org/0000-0001-8031-2319</orcidid></addata></record> |
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| ispartof | Journal of intellectual disability research, 2023-01, Vol.67 (1), p.77-88 |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; Education Source; Wiley Online Library Journals Frontfile Complete |
| subjects | Academic achievement Aging Between-subjects design Caregivers Child Child, Preschool Down syndrome Down Syndrome - complications Down Syndrome - therapy Humans Medical diagnosis Medical screening Nerve stimulation Obstructive sleep apnea Obstructive sleep apnoea Online Surveys Pediatrics Polls & surveys Polysomnography Prevalence Sleep Sleep apnea Sleep Apnea, Obstructive - diagnosis Sleep Apnea, Obstructive - epidemiology Sleep Apnea, Obstructive - therapy Sleep disorders Sleep studies Sociodemographics |
| title | Caregiver knowledge of obstructive sleep apnoea in Down syndrome |
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