I Tijdschrift voor Artsen voor Jaargang 35 - nr. 1 Verstandelijk Gehandicapten Maart 2017 In dit nummer: Glasgow Angst schaal Overdracht gezondheids informatie Screening ASS Reanimatiebeleid Het TAVG is het verenigingsblad van de Nederlandse Vereniging van Artsen voor Verstandelijk Gehandicapten (NVAVG). Deze vereniging, opgericht in 1981, stelt zich ten doel: het handhaven, c.q. verbeteren van de kwaliteit van de medische dienstverlening in de zorg voor mensen met een verstandelijke handicap, onder meer door: - het bevorderen van de onderlinge gedachtewisseling en samenwerking van artsen in de zorg voor mensen met een verstandelijke handicap; - het bevorderen van meningsvorming en standpuntbepaling t.a.v. onderwerpen die van belang kunnen zijn voor de organisatie en het functioneren van de medische dienst-verlening in de zorg voor mensen met een verstandelijke handicap. De vereniging telt ongeveer 300 leden. Het lidmaatschap staat open voor artsen, werk- zaam in de zorg voor mensen met een verstandelijke handicap. Het TAVG streeft ernaar minstens tweemaal per jaar te verschijnen. De redactie stelt zich O ten doel alle artsen, die werkzaam zijn in de zorg voor mensen met een verstandelijke v e handicap, op de hoogte te stellen van ontwikkelingen binnen dit vakgebied. Daartoe maakt r zij gebruik van verslagen van studiedagen, congressen, van oorspronkelijke artikelen, T A casuïstiek, boekbesprekingen, het aankondigen van nieuwe initiatieven, van ingezonden V stukken en voorts van alles wat aan het bereiken van de doelstelling kan bijdragen. G . . . Inhoudsopgave Verenigingsadressen Redactioneel 3 Bestuur (te bereiken via mail of het Van de redactie 3 secretariaat) Artikelen 4 Dhr. B. (Bas) Castelein, voorzitter a.i. E-mail: [email protected] Why we should start paying attention to the auditory environment of people 4 with severe or profound intellectual disabilities Mw. D. (Danielle) Peet, penningmeester Glasgow Angst schaal 9 E-mail: [email protected] Impressie NVAVG studiedag 12 Dhr. M. (Matijn) Coret, secretaris Overdracht van gezondheidsinformatie 13 E-mail: [email protected] Volwassenen met een verstandelijke beperking screenen op Autisme Spectrum Stoornis 16 Mw. S. (Saskia) Stienezen-de Klein Substance use and misuse in individuals with Intellectual Disability (SumID) 21 E-mail: [email protected] Het niet reanimeren bij mensen met een verstandelijke beperking 24 Dhr. M. (Marien) Nijenhuis onderstreept het belang van overleg E-mail: [email protected] Column 27 Secretariaat Mw. P. (Petra) Noordhuis Uitwisseling van gezondheidsinformatie 27 Postbus 6096, 7503 GB Enschede Aangepast gedrag 28 E-mail: [email protected] Tel.: 0878-759338 (parttime bezet) Elders gepubliceerd 29 Lidmaatschap NVAVG Diversen 33 € 400,- per jaar. Voor aios-AVG en Bureau Richtlijnontwikkeling komt op stoom! 33 gepensioneerde leden geldt een gereduceerd tarief van € 250,- per De AVG en eigen regie 35 jaar. De media: vijand of vriend? 36 Onlangs vastgestelde NVAVG-documenten 39 Website Ja Tubereuze Sclerose Complex (TSC) 39 www.nvavg.nl a rg a Aios nieuws van de VAAVG 40 n g 3 Oproepen 40 5 , m a Pijn bij Williams, Prader-Willi en Fragiele-X syndromen 40 a rt - N Oproepen TAVG: tip de redactie! 41 u Uw outcomedoelstelling informatieb eraad VWS in 2018 gereed? 42 m m Gezocht: proefpersonen voor triple X syndroom research 43 e r 1 2 Van de redactie (ook namens de voorzitter) Petra Noordhuis. Met mijn secretariaatspet op krijg ik veel aanvraag en bij een akkoord verschijnt de scholing op de vragen van organisatoren van bijscholingen, website. Op een aparte pagina, zodat u niet meer alle die hun scholing graag willen promoten via scholingen op de algemene nascholingagenda hoeft door het TAVG of de NVAVG website. Gezien het te scrollen. enorme aantal aanvragen heeft het bestuur eerder besloten om daar geen gehoor aan Wat betreft aankondigingen van symposia ziet u hieronder te geven. Het TAVG zou dan immers een een uitzondering. Dit betreft het afscheidssymposium van advertentieblad worden, wat niet de bedoeling Wiebe Braam, AVG en redactielid van het TAVG. Wie in de kan zijn van een wetenschappelijk tijdschrift. toekomst een aankondiging van een afscheids symposium De vraag bleef echter gesteld worden, daarom van één van de leden in het TAVG wil plaatsen, kan een R e heeft het bestuur een compromis bedacht. verzoek indienen bij de redactie via [email protected]. d a c Organisatoren van bijscholingen kunnen via de website Voor nu wens ik Wiebe namens de redactie én het bestuur t i o een formulier invullen, waarop alle relevante informa- een drukbezocht afscheidssymposium en een mooie tijd n tie voor AVG-bijscholingen staat. Wij beoordelen deze als gepensioneerd AVG! e e l 15 jaar slaappoli: Wat weten we nu? Afscheidssymposium Wiebe Braam en Anneke Maas Wiebe Braam en Anneke Maas nemen afscheid van ’s Heeren Loo. Zij stonden vijftien jaar geleden aan de basis van onze slaappoli. Dit is dé gelegenheid om stil te staan bij slaapproblemen in de VG. Wij organiseren daarom op 5 april 2017 het symposium: 15 jaar slaappoli: wat weten we nu? We nodigen u van harte uit bij ’s Heeren Loo locatie De Hartenberg in Wekerom. Op het symposium spreken bijzonder hoogleraar Leopold Curfs, neuroloog - somnoloog Marcel Smits, Mieke van Leeuwen van VG netwerken, ergotherapeut Stefanie Anisuzzaman en natuurlijk Wiebe Braam en Anneke Maas. De dagvoorzitter is Petra Noordhuis. Schrijf u in ’s Heeren Loo ondersteunt in bijna het hele land mensen met een verstandelijke beperking. Jong Het symposium wordt u kosteloos aangeboden en de en oud helpen wij een passend antwoord te vinden accreditatie voor AVG is aangevraagd. op grote en kleine vragen. Dichtbij en samen met Ja a Ga naar www.sheerenloo.nl/slaapsymposium voor meer de mensen die belangrijk voor hen zijn. De cliënt rg a informatie. Hier kunt u zich tevens inschrijven. maakt eigen keuzes en wij ondersteunen hem n g hierbij. Het gaat om de cliënt; om wie hij is en om 3 5 wat hij kan en wil. , m a a rt - N u m m e r 1 3 Why we should start paying attention to the auditory environment of people with severe or profound intellectual disabilities Kirsten v.d. Bosch In her seminal work ‘Notes on Nursing: motor disabilities such as spastic quadriplegia, but also a What it is and What it is Not’, Florence high prevalence of seizure disorders like epilepsy diminishes Nightingale already understood and their freedom of movement and daily functioning (Arvio & emphasized the deleterious effects of noise Sillanpää, 2003; Nakken & Vlaskamp, 2007). A on both sick and well individuals. However, r t with a strong focus on the visual domain in Speech deficits are among the most prevalent related i k research, architecture, and healthcare, the impairments (Arvio & Sillanpää, 2003) and most people e l focus on sound in research on quality of life, with severe or profound intellectual disabilities function e n despite Nightingale’s conclusions, seems to at the preverbal stage of communication, indicating their have diminished. Although there is a well- spoken language is limited, and they can only understand established body of research on the acute some simple instructions and gestures (APA, 2013; effects of noise, there is little knowledge about Goldbart, 1997). Sensory impairments in all modalities the effects of sound in long-term healthcare are also common among these people. This includes settings, which holds in particular for special malfunctioning olfaction (smell) and gustation (taste) needs care. (Doty et al., 2002) and impaired tactile and coetaneous senses (touch, pressure, temperature, and pain) Severe or profound intellectual disabilities (Oberlander, Gilbert, Chambers, O’Donnell, & Craig, In the DSM-5 (American Psychiatric Association, 2013), 1999). These sensory impairments are however often intellectual disabilities are defined as neurodevelopmental overlooked and the assessment of these dysfunctions disorders “with onset during the developmental period is extremely difficult, due to the limited cognitive and that includes both intellectual and adaptive functioning communicative abilities of people with severe or profound deficits in conceptual, social, and practical domains.” This intellectual disabilities. entails prominent deficiencies in intellectual functions such as learning (from experience and instruction), reasoning, More obvious and notable sensory impairments include judgment, and problem solving, as well as deficits in adap- auditory and visual disabilities. The prevalence of visual tive functioning. The severity of the intellectual disability is disabilities increases with the severity of the intellectual categorized based on adaptive functioning, determining disability, with an estimate of 70-85% of people with a the level of support needed. According to the APA, people profound intellectual disability experiencing visual disor- with severe intellectual disabilities require support for all ders, in most cases caused by impaired development of daily activities and constant supervision, and people with the visual cortex in the occipital lobe (cortical blindness) profound intellectual disabilities are dependent on others (Evenhuis, Theunissen, Denkers, Verschuure, & Kemme, for all aspects of daily physical care, health, and safety 2001; Van Splunder, Stilma, Bernsen, & Evenhuis, 2006; (APA, 2013). The AAIDD makes a distinction between ex- Warburg, 2001; Woodhouse, Griffiths, & Gedling, 2000). tensive support, which is often associated with a severe in- Auditory problems, although common, appear to be less tellectual disability, and pervasive support, associated with prevalent, with estimates between 30-80%, in people profound intellectual disabilities (Schalock et al., 2010). with PIMD (Evenhuis et al., 2001; Meuwese-Jongejeugd et al., 2006). An intellectual disability as extensive as described above is predominantly caused by genetic, congenital or acquired The lower prevalence of hearing deficits compared to Jaa biological factors, leading to encephalopathies (disor- visual deficits in people with severe or profound intellectual rga ders of the brain) with implications for the entire central disabilities can be explained by a more prominent role n g 3 nervous system (Arvio & Sillanpää, 2003). This explains the of (preserved) subcortical areas in hearing than in vision 5, m high comorbidity with other (motor, sensory, and psychia- (Andringa & Lanser, 2013). Although visual and auditory a tric) disabilities, characteristic for this group. Most people impairments seem hard to miss, they are still an “unnoticed, a rt - N with severe or profound intellectual disabilities suffer from undiagnosed and untreated problem” (Newsam, u m m e r 1 4 Walley, & McKie, 2010). Some studies estimate that up disease, and myocardial infarction. Reviews of these studies to 85% of ocular disorders and 63% of hearing loss (Ising & Kruppa, 2004; WHO, 2011) show that most of remain unnoticed in people with intellectual disabilities these effects are conform to the noise-stress hypothesis, (Kerr et al., 2003; McCullough, Sludden, McKeown, which states that noise is a nonspecific stressor that & Kerr, 1996). Reasons for this clinical failure include activates the autonomic nervous system and endocrine diminished communicative opportunities, assessment system. This stress response elicits changes in stress difficulties, and diagnostic overshadowing, where hormones such as cortisol and (nor)epinephrine, affecting behavioral manifestations indicative of sensory impairments the individuals’ metabolism, and increasing the risk for are misattributed to the intellectual disability (Carvill, cardiovascular diseases. These effects seem to occur 2001; Evenhuis, Mul, Lemaire, & de Wijs, 1997; Lennox, above noise levels around 65 dB(A) (Babisch, 2002; Ising Diggens, & Ugoni, 1997). & Kruppa, 2004). Forasmuch as intellectual and related disabilities are caused by a damaged or underdeveloped Taken together, the combination and severity of their cortex, it could be assumed that the autonomic nervous disabilities entails that people with severe or profound system is essentially still functional. Therefore, there is A r intellectual disabilities make up an incredibly heterogeneous no reason to believe that these noise induced and stress t i group, characterized by a high degree of vulnerability related symptoms would not occur in people with severe k e and lack of autonomy, with a great dependence on or profound intellectual disabilities. l e others for the gratification of their daily needs (Nakken n & Vlaskamp, 2007). It’s not surprising that the combination Sleep of intellectual and visual disabilities cause these individuals Sound furthermore has the power to wake us up when to be more vulnerable to develop behavioral problems we sleep, and therefore it can contribute to sleep and psychiatric illnesses (Carvill, 2001), and that sensory disturbances. Ample undisturbed sleep is fundamental problems are associated with the onset of challenging in maintaining and restoring good health, performance, behavior (Poppes, Van der Putten, & Vlaskamp, 2010). and well-being (Banks & Dinges, 2007; Colten & Altevogt, Therefore, we hypothesize that a lack of attention for the 2006). Consequently, noise can have a full array of short- quality of the auditory environment plays a major role in to long-term effects on sleep, ranging from awakening the occurrence and perseverance of suboptimal wellbeing during the night, sleepiness during the day, to chronic in these individuals. insomnia (WHO, 2011). Sound can wake us up because it is partly processed subcortically. The first and fastest signal The effects of noise on well-being detection is mediated by the amygdala, which induces the Since there is hardly any information available on the release of stress hormones when a sound is categorized effects of noise on people with severe or profound as potentially dangerous (Ising & Kruppa, 2004). It is intellectual disabilities, literature concerning people therefore no surprise that disrupted sleep is associated without disabilities is examined as a basis for this plea, with heart rate elevations, increased risk of cardiovascular and possible effects on people with disabilities are drawn and coronary diseases, and impaired immune function from that. Research on the effects of noise on the well- (Buxton et al., 2012). being of non-disabled people indicates that the sound in our environment plays an important role in physical Even at relatively low sound levels, elevated levels of and psychological well-being. Noise is commonly defined stress hormones can be measured (Evans, Bullinger, & as loud or unwanted sound that causes disturbance. Hygge, 1998), and long-term exposure to noise during Recently, the World Health Organization (2011) published the night could lead to permanently increased cortisol a report, quantifying the amount of healthy life years lost levels (Mashke, Harder, Ising, Hecht, & Thierfelder, 2002). to the effects of environmental noise (in Europe). All in all, From research on sleep disruptions in hospitals it became it was calculated that every year at least 1 million healthy clear that the probability of disruptions in sleep increases life years are lost in Western Europe, due to traffic-related when the sounds one is exposed to become louder, that noise alone. More specifically, they studied the detrimental electronic sounds are more alarming than other sounds, effects of noise in five categories: cardiovascular disease, and that continuous sounds induce less arousal than non- sleep disturbance, tinnitus, cognitive impairment in continuous sounds. However, conversations amongst the children, and annoyance. personnel were also found to be highly alerting (Buxton et Jaa rg al., 2012). For people with severe or profound intellectual a n Cardiovascular disease disabilities, who often experience trouble sleeping (Didden, g 3 Cardiovascular diseases are one of the most studied Korzilius, Aperlo, Overloop, & Vries, 2002; Doran, 5, m adverse effects of noise exposure and include, amongst Harvey, & Horner, 2006), this could mean that their sleep a a others, hypertension, high blood pressure, ischaemic heart is considerably disturbed by all the sounds in their rt - N u m m e r 1 5 environment, with all kinds of detrimental health effects leading to an increased listening effort. In classrooms as a result. Improving the quality of their auditory this could lead to stress, fatigue, and annoyance, with environments, could improve the quality of their sleep. a worsened atmosphere (Evans & Hygge, 2007) and less positive social relations between teachers and students Tinnitus as a result (Klatte et al., 2010). Teachers in classrooms that Tinnitus is the experience of hearing sound, when there have a long reverberation time are also known to report is no actual external stimulus, and is often described as in sick more often than colleagues teaching in classrooms ringing in the ears. Tinnitus is known to induce stress, with good acoustics (MacKenzie & Airey, 1999). sometimes leading to sleep problems, depression, anxiety, and many more adverse effects. There is a strong relation Research indicates that prolonged noise in classrooms can between noise exposure and tinnitus, with 50-90% of even have adverse effects on language acquisition and patients who experience chronic noise trauma reporting pre-reading skills (Maxwell & Evans, 2000), and on the tinnitus (WHO, 2011), and noise-induced hearing loss is development of phonological working memory, which A thus one of the most common causes of tinnitus (Han, is essential for a child’s cognitive development (Klatte et r t Lee, Kim, Lim, & Shin, 2009). This gives reason to believe al., 2010). Studies on the effects of environmental (road i k that people with severe or profound intellectual disabilities traffic and aircraft) noise on the performance of young e l could also suffer from tinnitus. However, since tinnitus is children (7-11 years) also show deficits in long-term e n only diagnosable via self-report, it is extremely difficult to memory and reading comprehension, recognition memory, reliably assess within this target group. and intentional and incidental memory (Hygge, Evans, & Bullinger, 2002; Lercher, Evans, & Meis, 2003 Stansfeld Cognitive impairment in children et al., 2005). Fortunately, the study by Hygge et al. (2002) Cognitive impairment in children relates to the extent to gives reason to believe that these effects can be reversed which noise hinders their cognitive capacities. It seems after the exposure ceases, with the cognitive capacities of that noise has a greater impact on children than on adults the participants returning to normal within 18 months. (Klatte, Hellbrück, Seidel, & Leistner, 2010) and considering However, these results should be interpreted with caution, that people with intellectual disabilities are often described since it is conceivable that a child who has been exposed as functioning on a premature level, it could be valuable to noise for years on end could suffer from a permanent to look at research on non-disabled children as opposed to delay in development. adults. Children need better listening conditions, or better signal-to-noise ratios, to recognize speech (Fallon, Trehub, Considering that people with severe or profound intellectual & Schneider, 2000). This is probably caused by the fact disabilities already have less cognitive capacity as defined that they have less knowledge to generate proper signal by their intellectual disability and often experience sensory expectations to compensate for the degraded speech impairments, it could very well be that the above described signal (Saija, Akyürek, Andringa, & Başkent, 2014) and effects of noise on cognitive functioning are exaggerated they have greater difficulty focusing attention. Especially in these people. Especially when the amplified effects working memory seems to be sensitive to distractions of noise on the functioning of children as compared to caused by sound (Beaman, 2005). These effects count adults are considered. Together with the increased risk of even more for children with special educational needs cardiovascular diseases due to stress, and the role of noise (Klatte et al., 2010). in sleep disturbances, it could be that noise serves as an important harmful factor in the well-being of people with Unfavorable listening conditions are often the result severe or profound intellectual disabilities. of bad acoustic conditions, such as long reverberation times. Reverberation is the persistence, through minimally Annoyance attenuating reflections, of a sound after it is produced. Annoyance is the last category of detrimental effects Because of the long reverberation, unwanted sounds of noise that is addressed in the report from the World remain audible longer, they increase the noise level, and Health Organization (2011). The WHO reports that people reduce speech intelligibility effectively. This causes people who experience sound annoyance suffer from various to raise their voices to make themselves heard, causing consequences, such as helplessness, depression, anger, Jaa even more noise, a phenomenon known as the Lombard anxiety, agitation, dissatisfaction or disappointment (Fields rga or café effect (Klatte et al., 2010; Lubman & Sutherland, et al., 2001; Job, 1993). These adverse effects indicate n g 3 2002; Whitlock & Dodd, 2008). a qualitative difference compared to the physiological 5 , m effects such as cardiovascular disease or sleep disturbance. a Even when speech is fully intelligible, bad acoustics require Annoyance seems to be a psychological, or emotional, a rt - N more cognitive resources to decode the degraded signal, response to sound. Research has confirmed that these u m m e r 1 6 emotional responses to sounds from the everyday Suggestions on how to improve the acoustics in environment also exist in people with severe or profound residential facilities and day care services for people with intellectual and multiple disabilities (Van den Bosch, severe or profound intellectual disabilities can be drawn Vlaskamp, Andringa, Post, & Ruijssenaars, 2016), and from research on noise in hospitals (Herman Miller, 2009). that negative moods and stereotypical challenging For example, the building materials of the walls, floors, behaviour within this group can be significantly reduced and ceilings, make up for most of the (unfavorable) by improving the quality of the auditory environment in acoustical properties of hospital rooms. One study showed residential facilities (Van den Bosch, 2016). Also, natural that by replacing the ceiling with acoustical tiles, and sounds have a greater relaxing effect than non-natural applying sound-absorbing carpet on the floor, the overall sounds (Van den Bosch, Andringa, Peterson, Ruijssenaars, loudness of the auditory environment reduced and quality & Vlaskamp, 2016). of sleep of the patients improved, without sacrificing the hygiene of the environment (Dubbs, 2004). Also by simply In general, it is argued by soundscape researchers lubricating the moving parts of (heavy) rolling equipment, (soundscapes being defined as auditory environments can the noise levels be decreased significantly (Mazer, A r as perceives by the individual; Truax, 1978) that under- 2002). These interventions can also be applied in the t i standing the acoustical properties of a certain place is living environments of people with severe or profound k e far less important than understanding how that place intellectual disabilities, and should already be considered l e influences a person emotionally. Since people with severe when designing and building such facilities. One extreme n or profound intellectual disabilities have more difficulty example found was a bedroom situated directly next to a in processing and understanding the world around them, laundry room where the laundry machines frequently were it is fair to assume that they experience difficulties in on during the nights. Obviously, this came at the expense attributing meaning to certain sounds. This increases the of the quality of sleep of the resident, which easily could probability of them appraising soundscapes as unpleasant, have been avoided. as compared to the non-disabled population. Discussion Practical implications One important question that remains to be answered Studies seem to indicate that there is a threshold of noise is how people with severe or profound intellectual level around 65 dB(A) during the daytime at which the disabilities actually perceive their auditory environment. risk of cardiovascular disease arises (Babisch, 2002; Given their profound intellectual disability, it is likely that Ising & Kruppa, 2004). Examples of sounds that have a they process and interpret sound in a different way than loudness around 65 db(A) are an air-conditioning system people without disabilities. People without intellectual or a washing machine, a normal conversation, or the disabilities are likely to rely more on knowledge driven sound of a television. Considering these sounds are all (top-down) processing and can, for example, distinguish fairly common in residential facilities for people with the importance of sounds. People with severe or profound severe or profound intellectual disabilities (and probably intellectual disabilities might do this poorly, more slowly, other long term healthcare settings), and often occur or not at all. Individual sounds may appear equally simultaneously, this entails that there is an increased risk important to them, because prioritizing might be difficult of cardiovascular diseases (and other adverse effects of and they may have difficulties in attending to different noise) for the residents as well as the personnel. sound sources effectively. Therefore, care must be taken that not too many (loud) Only by researching, in a controlled way, how people with sound sources are audible simultaneously, and definitely severe or profound intellectual disabilities react to different not for prolonged periods of time. For pleasant appraised kinds of soundscapes, will we be able to unravel the sounds, usually no limits need to be imposed on sound actual perceptual processes of these people. Behavioral level or duration. For unpleasant sounds, there is a correlates of soundscape quality, affect, and physiological distinction between continuous and non-continuous measures, which are objectively observable phenomena, sound sources: continuous sounds (like constant music or might offer insight into the subjective experiences and appliances) generally become more annoying the louder auditory processing of these individuals. The work of Vos, they become, and non-continuous sounds (such as people De Cock, Munde, Petry, Van Den Noortgate, and Maes Jaa entering, doors closing loudly) get more intrusive the more (2012) may serve as a basis for such research. rga n often and longer they occur (Booi & van den Berg, 2012). The perceptual processes of people with severe or g 3 Also, non-reassuring sounds coming from behind should profound intellectual disabilities could be of interest to 5, m be avoided, as they may elicit more arousal (Tajadura- perception research in general, since they might inform us a a Jiménez et al., 2010). of the fundamental aspects of auditory processing, rt - N u m m e r 1 7 R.J., Ceranic, B., Luxon, L.M., & Brandt, T. (2002). Part IV. Disorders of because their (subcortical) responses might be less inhibited the special senses. In J.C. McArthur (Ed.), Diseases of the nervous or modified by higher cognitive (and culturally biased) system: Clinical neuroscience and therapeutic principles (3rd ed.) vol. 1&2 (pp. 595-691). New York, NY, USA: Cambridge University Press. processing. • Dubbs, D. (2004). Sound effects: design and operations solutions to hospital noise. Health facilities management, 17(9), 14-18. • Evenhuis, H. M., Mul, M., Lemaire, E. K. G., & de Wijs, J. P. M. (1997). Furthermore, the main objective in residential special Diagnosis of sensory impairment in people with intellectual disability in needs care is to provide the best possible care to maintain general practice. Journal of Intellectual Disability Research, 41, 422–429. and improve the well-being of its residents. As long as • Evenhuis, H. M., Theunissen, M., Denkers, I., Verschuure, H., & Kemme, H. (2001). Prevalence of visual and hearing impairment in a Dutch the auditory environment continuous to be overlooked, institutionalized population with intellectual disability. Journal of this objective will not be realized, because the auditory Intellectual Disability Research, 45(5), 457-464. doi: 10.1046/j.1365- 2788.2001.00350.x environment has a significant influence on their (physical • Evans, G. W., Bullinger, M., Hygge, S. (1998) Chronic noise exposure and psychological) well-being. Therefore, we should invest and physiological response: A prospective study of children living under more in research on this topic and take careful notice of environmental stress. American Psychological Soc., Vol.9: 75-77 • Evans, G., & Hygge, S. (2007). Noise and cognitive performance in the auditory environment in long-term healthcare settings children and adults. In L. M. Luxon, & D. Prasher (Eds.), Noise and its A to ensure it is of the best possible quality. effects (pp. 549-566). New York: John Wiley. r • Fallon, M., Trehub, S. E., & Schneider, B. A. (2000). Children’s perception t i of speech in multitalker babble. Journal of the Acoustical Society of k America, 108, 3023-3029. e l Acknowledgements: • Fields, J.M., De Jong, R.G., Gjestland, T., Flindell, I.H., Job, R.F.S., e Kurra, S., … Schumer, R. (2001). Standardized general-purpose noise n My gratitude goes to em. prof. dr. Carla Vlaskamp, reaction questions for community noise surveys: Research and a em. prof. dr. Wied Ruijssenaars, prof. dr. Deniz recommendation. Journal of sound and vibration, 242(4), 641-679. • Goldbart, J. (1997). Opening the communication curriculum to students Başkent and dr. Tjeerd Andringa for their conti- with PMLDs. In J. Ware (Ed.), Educating children with profound and nuous support during the research that led to this multiple learning difficulties (pp. 15–63). London: David Fulton Publishers. publication. • Han, B. I., Lee, H. W., Kim, T. Y., Lim, J. S., & Shin, K. S. (2009). Tinnitus: characteristics, causes, mechanisms, and treatments. Journal of Clinical Neurology, 5(1), 11-19. • Herman Miller. (2009). Sound Practices: Noise Control in the Healthcare Environment. Retrieved from: http://www.hermanmiller.com/ MarketFacingTech/hmc/research_summaries/pdfs/wp_Sound_Practices.pdf References • Hygge S, Evans G.W., Bullinger M. (2002). A prospective study of some • American Psychiatric Association. (2013). 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The Lancet, CEO | [email protected] 365(9475), 1942-1949. www.soundappraisal.eu Glasgow Angst Schaal Betrouwbaarheid en validiteit bij mensen met een verstandelijke beperking Heidi Hermans Inleiding Angst komt vaak voor bij volwassenen met een of medicatie zijn te behandelen.[9, 10] Juist vanwege de verstandelijke beperking (VB).[1-4] Volwassenen met een internaliserende symptomen heeft zelfrapportage de lichte of matige VB hebben vaker angstklachten dan voorkeur boven rapportage door informanten.[6, 11] Veel mensen met een ernstigere VB.[2, 5] Angstsymptomen zijn mensen met een lichte of matige VB zijn goed in staat Jaa deels internaliserende symptomen, waardoor het lastig om betrouwbaar te rapporteren over hun eigen angst- rga n is om deze te observeren.[6-8] Hierdoor is het moeilijk voor klachten [7, 12-14] mits het taalgebruik van de vragenlijst g 3 derden om de ernst van angstsymptomen te beoordelen. passend is.[15] Het aantal Nederlandse zelfrapportage 5, m Toch is het belangrijk om angst tijdig te herkennen, instrumenten om te screenen op angstklachten is echter a a omdat deze klachten met (cognitieve) gedragstherapie beperkt. Uit een literatuurstudie is gebleken dat de rt - N u m m e r 1 9 “Glasgow Anxiety Scale for people with an Intellectual Glasgow Angst Schaal voor mensen met een Disability” (GAS-ID) [16] een veelbelovend instrument is.[17] Verstandelijke Beperking Deze vragenlijst is in 2008 vertaald naar het Nederlands De GAS-ID (16) is een zelfrapportage instrument met en vervolgens zijn de betrouwbaarheid en validiteit 27 vragen over zorgen, specifieke angsten en fysiologische onderzocht. symptomen van angst, die op een 3-puntsschaal beant- woord worden. De totale score ligt tussen de 0 en 54. Methode Drie onderzoekers hebben onafhankelijk van elkaar de Studiepopulatie items en antwoordcategorieën van de GAS-ID vertaald De betrouwbaarheid en validiteit van de vragenlijst is deels naar het Nederlands, resulterend in de Glasgow Angst onderzocht binnen het Gezond OUDer met een verstande- Schaal voor mensen met een Verstandelijke Beperking lijke beperking (GOUD)-onderzoek dat uitg evoerd is bij drie (GAS-VB). Vervolgens zijn de drie vertaalde versies zorgorganisaties.[18] Deelnemers waren 50 jaar of ouder besproken en is consensus bereikt over de uiteindelijke en ontvingen zorg of ondersteuning van één van deze drie versie. Deze consensus versie is terugvertaald naar het A organisaties. Om de heterogeniteit van de studiepopulatie Engels door een van oorsprong Engelstalige student. r t en daarmee de generaliseerbaarheid van de resultaten te Deze vertaalde versie vertoonde taalkundige verschillen i k vergroten zijn aanvullende studies in een vierde zorgor- maar geen inhoudelijk betekenisvolle verschillen. e l ganisatie voor mensen met een VB en bij een gespeciali- e n seerde GGZ voor mensen met een VB gedaan. De totale Meetprocedure studiepopulatie bestond uit 195 deeln emers, waarvan 133 De GAS-VB is voornamelijk mondeling bij de deelnemers deelnemers zorg ontvingen bij één van de vier zorgorga- afgenomen. De deelnemers vanuit de gespecialiseerde nisaties voor mensen met een VB en 62 deelnemers in GGZ hebben de vragenlijst zelf ingevuld met ondersteuning behandeling waren bij de gespecialiseerde GGZ. Kenmer- van een psycholoog. Om de test-hertest-betrouwbaarheid ken van de studiepopulatie staan in Tabel 1 (zie hieronder). te onderzoeken hebben de deelnemers de vragen twee- Voor datav erzameling die buiten de reguliere zorg viel, is maal beantwoord met een tussenpoos van twee weken. toestemming verkregen van de Medisch Ethische Toetsings- Det criteriumvaliditeit is onderzocht door de uitkomst commissie van het Erasmus MC in Rotterdam. op de GAS-VB te vergelijken met de uitkomst van een Tabel 1: Kenmerken van de studiepopulatie Oorzaken Populatie test-hertest- Totale populatie betrouwbaarheid n 195 Geslacht (man/vrouw) 66 74/121 Leeftijd 35/31 Gemiddelde (s.d.) 50,3(17,6) Range 51,9 (15,6) 16,3-86,6 Woonsetting (%) 19,2-80,5 Woonvoorziening op centrale locatie 25 (12,8) Woonvoorziening in de wijk 2 (3,0) 100 (51,3) Zelfstandig wonen met ambulante ondersteuning 50 (75,8) 37 (19,0) Zelfstandig wonen zonder ondersteuning of met familie 14 (21,2) 33 (16,9) Mate VBa (%) 0 (0,0) Zwakbegaafd (IQ = 70-84) 46 (23,6) Lichte VB (IQ = 50-69) 5 (7,6) 110 (56,4) Matige VB (IQ =35-49) 43 (65,2) 31 (15,9) Onbekendb 11 (16,7) 8 (4,1) Psychiatrische diagnose (%) 7 (10,6) Depressie 28 (14.4) Angststoornis 10 (15,2) 56 (28.7) GASc 13 (19,7) 4 (2.1) Paniekstoornis 1 (1,5) 8 (4.1) Fobie 1 (1,5) 18 (9.2) Ja PTSSd 11 (16,7) 24 (12.3) arg Angststoornis NAOe 0 (0,0) 2 (1.0) an Autisme spectrum stoornis 0 (0,0) 12 (6.2) g 3 Overig 7 (10,6) 47 (24.1) 5, m 11 (16,7) aa a VB: verstandelijke beperking d PTSS = post-traumatische stressstoornis rt - N bc GMAaSte = V gBe wgeans enriaeltis veaesrtdgee alenggdststoornis e Niet anders omschreven u m m e r 1 1 0