Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities
Background A population‐based epidemiological study on visual and hearing impairment was planned in a random sample of 2100 clients, drawn from a base population of 9012 users of Dutch residential and day‐care intellectual disability (ID) services with the whole range of IDs. Stratification was app...
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| Veröffentlicht in: | Journal of intellectual disability research 2004-11, Vol.48 (8), p.708-718 |
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| creator | Evenhuis, H. Van Splunder, J. Vink, M. Weerdenburg, C. Van Zanten, B. Stilma, J. |
| description | Background A population‐based epidemiological study on visual and hearing impairment was planned in a random sample of 2100 clients, drawn from a base population of 9012 users of Dutch residential and day‐care intellectual disability (ID) services with the whole range of IDs. Stratification was applied for age 50 years and over and Down syndrome. Visual and hearing functions were assessed according to a standardized protocol, in cooperation with regular ophthalmologists and regional audiological centres. Anticipated obstacles in sample collection, random inclusion, informed consent, expertise of investigators, time and costs were eliminated by a careful preparation. However, inclusion and participation were incomplete.
Method In a descriptive retrospective design, we collected data from our study files on inclusion and participation as well as reasons for non‐participation, to identify unanticipated obstacles for this kind of research.
Results Consent was obtained for 1660 clients, and 1598 clients participated in the data collection (76% of intended sample of 2100). Inclusion and participation rates were especially lower in community‐based care organizations, resulting in unintentional skewing of the sample towards more severe levels of ID. Complete and reliable data to diagnose visual impairment were obtained for 1358/1598 (85%) and to diagnose hearing impairment for 1237/1598 participants (77%). Unanticipated obstacles had to do with the quality of coordination within care organizations, with characteristics of screening methods, and with collaboration with the regular health care system. Assessments of visual function were more easy to organize than were those of hearing. Based on our current experience, practical recommendations are given for future multicentre research, especially in community‐based settings. |
| doi_str_mv | 10.1111/j.1365-2788.2003.00562.x |
| format | Article |
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Method In a descriptive retrospective design, we collected data from our study files on inclusion and participation as well as reasons for non‐participation, to identify unanticipated obstacles for this kind of research.
Results Consent was obtained for 1660 clients, and 1598 clients participated in the data collection (76% of intended sample of 2100). Inclusion and participation rates were especially lower in community‐based care organizations, resulting in unintentional skewing of the sample towards more severe levels of ID. Complete and reliable data to diagnose visual impairment were obtained for 1358/1598 (85%) and to diagnose hearing impairment for 1237/1598 participants (77%). Unanticipated obstacles had to do with the quality of coordination within care organizations, with characteristics of screening methods, and with collaboration with the regular health care system. Assessments of visual function were more easy to organize than were those of hearing. Based on our current experience, practical recommendations are given for future multicentre research, especially in community‐based settings.</description><identifier>ISSN: 0964-2633</identifier><identifier>EISSN: 1365-2788</identifier><identifier>DOI: 10.1111/j.1365-2788.2003.00562.x</identifier><identifier>PMID: 15494060</identifier><language>eng</language><publisher>Oxford, UK: Blackwell Science Ltd</publisher><subject>Adolescent ; Adult ; Adult and adolescent clinical studies ; Adults ; Auditory Evaluation ; Bias ; Biological and medical sciences ; Cerebral Palsy ; Child Care ; Clinical Diagnosis ; Community Relations ; Comorbidity ; Data Collection ; Day Care, Medical - statistics & numerical data ; Down Syndrome ; Down Syndrome - diagnosis ; Down Syndrome - epidemiology ; Epidemiology ; Female ; Foreign Countries ; Hearing Disorders - diagnosis ; Hearing Disorders - epidemiology ; hearing impairment ; Hearing Impairments ; Humans ; Informed Consent ; Intellectual deficiency ; Intellectual Disability ; Intellectual Disability - diagnosis ; Intellectual Disability - epidemiology ; Learning disabled people ; Male ; Medical Evaluation ; Medical sciences ; Mental Retardation ; Methodology ; Middle Aged ; Netherlands ; Netherlands - epidemiology ; Patient Dropouts - statistics & numerical data ; Psychology. Psychoanalysis. Psychiatry ; Psychopathology. Psychiatry ; Reproducibility of Results ; Research Methodology ; Residential Care ; Residential Facilities - statistics & numerical data ; Retrospective Studies ; Sample Size ; Sampling Studies ; Sensory impairment ; Vision Disorders - diagnosis ; Vision Disorders - epidemiology ; visual impairment ; Visual Impairments</subject><ispartof>Journal of intellectual disability research, 2004-11, Vol.48 (8), p.708-718</ispartof><rights>2005 INIST-CNRS</rights><rights>Copyright Blackwell Science Ltd. Nov 2004</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5112-fb2b1dcae4f1efb0b8284c352479283dafc81923e3a8eb873c8808f4330e109a3</citedby><cites>FETCH-LOGICAL-c5112-fb2b1dcae4f1efb0b8284c352479283dafc81923e3a8eb873c8808f4330e109a3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fj.1365-2788.2003.00562.x$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fj.1365-2788.2003.00562.x$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27901,27902,30976,30977,45550,45551</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ686350$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=16214500$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/15494060$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Evenhuis, H.</creatorcontrib><creatorcontrib>Van Splunder, J.</creatorcontrib><creatorcontrib>Vink, M.</creatorcontrib><creatorcontrib>Weerdenburg, C.</creatorcontrib><creatorcontrib>Van Zanten, B.</creatorcontrib><creatorcontrib>Stilma, J.</creatorcontrib><title>Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities</title><title>Journal of intellectual disability research</title><addtitle>J Intellect Disabil Res</addtitle><description>Background A population‐based epidemiological study on visual and hearing impairment was planned in a random sample of 2100 clients, drawn from a base population of 9012 users of Dutch residential and day‐care intellectual disability (ID) services with the whole range of IDs. Stratification was applied for age 50 years and over and Down syndrome. Visual and hearing functions were assessed according to a standardized protocol, in cooperation with regular ophthalmologists and regional audiological centres. Anticipated obstacles in sample collection, random inclusion, informed consent, expertise of investigators, time and costs were eliminated by a careful preparation. However, inclusion and participation were incomplete.
Method In a descriptive retrospective design, we collected data from our study files on inclusion and participation as well as reasons for non‐participation, to identify unanticipated obstacles for this kind of research.
Results Consent was obtained for 1660 clients, and 1598 clients participated in the data collection (76% of intended sample of 2100). Inclusion and participation rates were especially lower in community‐based care organizations, resulting in unintentional skewing of the sample towards more severe levels of ID. Complete and reliable data to diagnose visual impairment were obtained for 1358/1598 (85%) and to diagnose hearing impairment for 1237/1598 participants (77%). Unanticipated obstacles had to do with the quality of coordination within care organizations, with characteristics of screening methods, and with collaboration with the regular health care system. Assessments of visual function were more easy to organize than were those of hearing. Based on our current experience, practical recommendations are given for future multicentre research, especially in community‐based settings.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Adult and adolescent clinical studies</subject><subject>Adults</subject><subject>Auditory Evaluation</subject><subject>Bias</subject><subject>Biological and medical sciences</subject><subject>Cerebral Palsy</subject><subject>Child Care</subject><subject>Clinical Diagnosis</subject><subject>Community Relations</subject><subject>Comorbidity</subject><subject>Data Collection</subject><subject>Day Care, Medical - statistics & numerical data</subject><subject>Down Syndrome</subject><subject>Down Syndrome - diagnosis</subject><subject>Down Syndrome - epidemiology</subject><subject>Epidemiology</subject><subject>Female</subject><subject>Foreign Countries</subject><subject>Hearing Disorders - diagnosis</subject><subject>Hearing Disorders - epidemiology</subject><subject>hearing impairment</subject><subject>Hearing Impairments</subject><subject>Humans</subject><subject>Informed Consent</subject><subject>Intellectual deficiency</subject><subject>Intellectual Disability</subject><subject>Intellectual Disability - diagnosis</subject><subject>Intellectual Disability - epidemiology</subject><subject>Learning disabled people</subject><subject>Male</subject><subject>Medical Evaluation</subject><subject>Medical sciences</subject><subject>Mental Retardation</subject><subject>Methodology</subject><subject>Middle Aged</subject><subject>Netherlands</subject><subject>Netherlands - epidemiology</subject><subject>Patient Dropouts - statistics & numerical data</subject><subject>Psychology. Psychoanalysis. Psychiatry</subject><subject>Psychopathology. Psychiatry</subject><subject>Reproducibility of Results</subject><subject>Research Methodology</subject><subject>Residential Care</subject><subject>Residential Facilities - statistics & numerical data</subject><subject>Retrospective Studies</subject><subject>Sample Size</subject><subject>Sampling Studies</subject><subject>Sensory impairment</subject><subject>Vision Disorders - diagnosis</subject><subject>Vision Disorders - epidemiology</subject><subject>visual impairment</subject><subject>Visual Impairments</subject><issn>0964-2633</issn><issn>1365-2788</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2004</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkVtv1DAQhSMEokvhHyBkIcFbgi-J40i8VL3RVdWKCsSj5XgnrZfc8CTq7hN_HWez2kq8gF9szfnOaMYnigijCQvn0zphQmYxz5VKOKUioTSTPNk8ixYH4Xm0oIVMYy6FOIpeIa4ppZKl8mV0xLK0SKmki-j3bYmDsTUgcS2pjb-HGK2pgUDvVtC4ru7uXSgQgwiIDbQD6SqC0GLnt8Q1vXF-qu4aGHI2DvaB9F0_1mZwXUse3fAQpAHqGuwwhk4rh6Z0tRsc4OvoRWVqhDf7-zj6fnH-7fRLfH17eXV6ch3bjDEeVyUv2coaSCsGVUlLxVVqRcbTvOBKrExlFSu4AGEUlCoXVimqqlQICowWRhxHH-e-ve9-jYCDbhzaMJNpoRtRS1kUPHzXP8EsZ5QqJQP4_i9w3Y2-DUtozpXcfXaA1AxZ3yF6qHTvXWP8VjOqpyj1Wk-J6SkxPUWpd1HqTbC-2_cfywZWT8Z9dgH4sAfMlFjlTWsdPnGSszSjE_d25sA7e5DPlzIskU3y51l-dDVs_3s-vby6C49gj2e7wwE2B7vxP7XMRZ7pHzeX-oKyr8ub_EzfiT_DstOq</recordid><startdate>200411</startdate><enddate>200411</enddate><creator>Evenhuis, H.</creator><creator>Van Splunder, J.</creator><creator>Vink, M.</creator><creator>Weerdenburg, C.</creator><creator>Van Zanten, B.</creator><creator>Stilma, J.</creator><general>Blackwell Science Ltd</general><general>Blackwell Publishing</general><general>Blackwell</general><general>Wiley Subscription Services, Inc</general><scope>BSCLL</scope><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>IQODW</scope><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></search><sort><creationdate>200411</creationdate><title>Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities</title><author>Evenhuis, H. ; Van Splunder, J. ; Vink, M. ; Weerdenburg, C. ; Van Zanten, B. ; Stilma, J.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5112-fb2b1dcae4f1efb0b8284c352479283dafc81923e3a8eb873c8808f4330e109a3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2004</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Adult and adolescent clinical studies</topic><topic>Adults</topic><topic>Auditory Evaluation</topic><topic>Bias</topic><topic>Biological and medical sciences</topic><topic>Cerebral Palsy</topic><topic>Child Care</topic><topic>Clinical Diagnosis</topic><topic>Community Relations</topic><topic>Comorbidity</topic><topic>Data Collection</topic><topic>Day Care, Medical - statistics & numerical data</topic><topic>Down Syndrome</topic><topic>Down Syndrome - diagnosis</topic><topic>Down Syndrome - epidemiology</topic><topic>Epidemiology</topic><topic>Female</topic><topic>Foreign Countries</topic><topic>Hearing Disorders - diagnosis</topic><topic>Hearing Disorders - epidemiology</topic><topic>hearing impairment</topic><topic>Hearing Impairments</topic><topic>Humans</topic><topic>Informed Consent</topic><topic>Intellectual deficiency</topic><topic>Intellectual Disability</topic><topic>Intellectual Disability - diagnosis</topic><topic>Intellectual Disability - epidemiology</topic><topic>Learning disabled people</topic><topic>Male</topic><topic>Medical Evaluation</topic><topic>Medical sciences</topic><topic>Mental Retardation</topic><topic>Methodology</topic><topic>Middle Aged</topic><topic>Netherlands</topic><topic>Netherlands - epidemiology</topic><topic>Patient Dropouts - statistics & numerical data</topic><topic>Psychology. Psychoanalysis. Psychiatry</topic><topic>Psychopathology. Psychiatry</topic><topic>Reproducibility of Results</topic><topic>Research Methodology</topic><topic>Residential Care</topic><topic>Residential Facilities - statistics & numerical data</topic><topic>Retrospective Studies</topic><topic>Sample Size</topic><topic>Sampling Studies</topic><topic>Sensory impairment</topic><topic>Vision Disorders - diagnosis</topic><topic>Vision Disorders - epidemiology</topic><topic>visual impairment</topic><topic>Visual Impairments</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Evenhuis, H.</creatorcontrib><creatorcontrib>Van Splunder, J.</creatorcontrib><creatorcontrib>Vink, M.</creatorcontrib><creatorcontrib>Weerdenburg, C.</creatorcontrib><creatorcontrib>Van Zanten, B.</creatorcontrib><creatorcontrib>Stilma, J.</creatorcontrib><collection>Istex</collection><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>Pascal-Francis</collection><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>Evenhuis, H.</au><au>Van Splunder, J.</au><au>Vink, M.</au><au>Weerdenburg, C.</au><au>Van Zanten, B.</au><au>Stilma, J.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><ericid>EJ686350</ericid><atitle>Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities</atitle><jtitle>Journal of intellectual disability research</jtitle><addtitle>J Intellect Disabil Res</addtitle><date>2004-11</date><risdate>2004</risdate><volume>48</volume><issue>8</issue><spage>708</spage><epage>718</epage><pages>708-718</pages><issn>0964-2633</issn><eissn>1365-2788</eissn><abstract>Background A population‐based epidemiological study on visual and hearing impairment was planned in a random sample of 2100 clients, drawn from a base population of 9012 users of Dutch residential and day‐care intellectual disability (ID) services with the whole range of IDs. Stratification was applied for age 50 years and over and Down syndrome. Visual and hearing functions were assessed according to a standardized protocol, in cooperation with regular ophthalmologists and regional audiological centres. Anticipated obstacles in sample collection, random inclusion, informed consent, expertise of investigators, time and costs were eliminated by a careful preparation. However, inclusion and participation were incomplete.
Method In a descriptive retrospective design, we collected data from our study files on inclusion and participation as well as reasons for non‐participation, to identify unanticipated obstacles for this kind of research.
Results Consent was obtained for 1660 clients, and 1598 clients participated in the data collection (76% of intended sample of 2100). Inclusion and participation rates were especially lower in community‐based care organizations, resulting in unintentional skewing of the sample towards more severe levels of ID. Complete and reliable data to diagnose visual impairment were obtained for 1358/1598 (85%) and to diagnose hearing impairment for 1237/1598 participants (77%). Unanticipated obstacles had to do with the quality of coordination within care organizations, with characteristics of screening methods, and with collaboration with the regular health care system. Assessments of visual function were more easy to organize than were those of hearing. Based on our current experience, practical recommendations are given for future multicentre research, especially in community‐based settings.</abstract><cop>Oxford, UK</cop><pub>Blackwell Science Ltd</pub><pmid>15494060</pmid><doi>10.1111/j.1365-2788.2003.00562.x</doi><tpages>11</tpages></addata></record> |
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| ispartof | Journal of intellectual disability research, 2004-11, Vol.48 (8), p.708-718 |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; Education Source; Wiley Online Library Journals Frontfile Complete |
| subjects | Adolescent Adult Adult and adolescent clinical studies Adults Auditory Evaluation Bias Biological and medical sciences Cerebral Palsy Child Care Clinical Diagnosis Community Relations Comorbidity Data Collection Day Care, Medical - statistics & numerical data Down Syndrome Down Syndrome - diagnosis Down Syndrome - epidemiology Epidemiology Female Foreign Countries Hearing Disorders - diagnosis Hearing Disorders - epidemiology hearing impairment Hearing Impairments Humans Informed Consent Intellectual deficiency Intellectual Disability Intellectual Disability - diagnosis Intellectual Disability - epidemiology Learning disabled people Male Medical Evaluation Medical sciences Mental Retardation Methodology Middle Aged Netherlands Netherlands - epidemiology Patient Dropouts - statistics & numerical data Psychology. Psychoanalysis. Psychiatry Psychopathology. Psychiatry Reproducibility of Results Research Methodology Residential Care Residential Facilities - statistics & numerical data Retrospective Studies Sample Size Sampling Studies Sensory impairment Vision Disorders - diagnosis Vision Disorders - epidemiology visual impairment Visual Impairments |
| title | Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities |
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