Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities.
Big sensory screenings for adults with ID fall apart without early agency teamwork and shared client lists.
01Research in Context
What this study did
MacCabe et al. (2004) looked back at a big Dutch project that tried to check vision and hearing in adults with intellectual disability. They wanted to see what made the rollout hard. The team worked with community agencies and care homes to invite people, run tests, and collect data.
What they found
Only 76% of invited adults took part. The main roadblocks were: lining up many agencies, picking a screening method that staff could use, and getting the health system to share client lists. When these pieces slipped, people were missed and records were incomplete.
How this fits with other research
Three years earlier, Richman et al. (2001) ran the same Dutch program and found lots of hidden sensory loss. That study proved the need; H et al. show why scaling it is tough.
Moss et al. (2009) later tripled deaf-blind detection in the UK by using stricter tests. Their success underlines H et al.'s point: good tools plus tight planning pay off.
Hild et al. (2008) screened 24% of Special Olympians with ID and found high hearing loss. Their smooth event-run contrasts with H et al.'s slower community model, giving you two blueprints to compare.
Why it matters
If you plan sensory screening for adults with ID, book extra weeks to lock in agency partners and shared client rosters before the first test day. Use the Dutch obstacle list as a checklist: coordination, method, health-system links. Fix these early and you will hit higher uptake, fewer gaps, and cleaner data just like Moss et al. (2009) did.
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2004 · doi:10.1111/j.1365-2788.2003.00562.x