recent health indicator data from participating … · 2006-10-31 · 2.1 epilepsy: recent data...

2.1 EPILEPSY: Recent Data from Member States

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RECENT HEALTH INDICATOR DATA FROM PARTICIPATING MEMBER STATES: HEALTH STATUS

2.1 EPILEPSY FOR PEOPLE WITH INTELLECTUAL DISABILITY MEMBER STATE

EVIDENCE OF EPILEPSY

SOURCE

AUSTRIA

A study of 129 people with intellectual disability aged between 50 and 69 years (71 male and 58 female) identified 13 individuals (10%) as having epilepsy. A study of 177 adults with Down’s Syndrome reported a similar figure of 9.1% as having experienced epileptic seizures.

Mühlberger, Peter (1998): Elderly with ID in Residential Centres of “Jugend am Werk” and “Caritas” in Vienna and Surrounding Areas. (Ältere Menschen mit geistiger Behinderung in den Wohneinrichtungen von Jugend am Werk und Caritas im Raum Wien-Umgebung.) Diplomarbeit an der Universität Wien Weber, G & Rett, A. (1991): Down Syndrome in Adulthood. (Down Syndrom im Erwachsenenalter.) Verlag Hans Huber, Bern

BELGIUM

No data available.

DENMARK

Danish research estimates that 25-30 % of all people with intellectual disability and 70 % of people with severe intellectual disability have epilepsy.

Videnscenter om epilepsy: Epilepsi hos udviklingshæmmede. Anfald og behandling. 1999. Reprint 2001.

FINLAND

Finnish research on the association between epilepsy and intellectual disability has been largely centred on this relationship among children. A prospective study following 12,058 children from birth to 14 years identified 208 as having

von Wendt L, Rantakallio P, Saukkonen AL, Makinen H. (1985) Epilepsy and associated handicaps in a 1 year birth cohort in northern Finland. Eur J Pediatr.


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epilepsy (defined as one or more afebrile seizure). Intellectual disability was the most frequently associated additional handicap, being reported in 28% of cases. From a sample of 21,104 children aged 4-15 years, 143 were identified as having epilepsy, a prevalence rate of 0.68%. The most frequent neurological impairment in addition to epilepsy was intellectual disability, which was present in 31.4% of cases. A sample of 151 children with intellectual disability were monitored for epilepsy at age 9, 10, 17 and 22 years. Results indicated that by the age of 10 years, 29 of the 151 children (19%) had epilepsy. The cumulative risk for epilepsy at 22 years was 21%. The probability of developing epilepsy was increased fivefold in children with severe intellectual disability compared with children with mild intellectual disability, that is, in 27 of the 77 severely disabled children (35%) versus 5 of the 74 mildly disabled children (7%).

1985 Jul;144 (2):149-51. Sillanpaa M. (1992) Epilepsy in children: prevalence, disability, and handicap. Epilepsia. 1992 May-Jun;33(3):444-9. Airaksinen EM, Matilainen R, Mononen T, Mustonen K, Partanen J, Jokela V, Halonen P. (2000). A population-based study on epilepsy in mentally retarded children. Epilepsia. Sep;41(9):1214-20.

FRANCE

No data available.

GERMANY

The prevalence of epilepsy in the general population in Germany is estimated at approximately 1%. For people with severe intellectual disability the prevalence rises to about 21%. If people with severe intellectual disability also have cerebral palsy, the prevalence of epilepsy may reach 50%.

Schädler, H (9/2002).: Epilepsie und Mehrfachbehinderung. In: Nervenheilkunde..

IRELAND

The prevalence of epilepsy among adult with intellectual disability in Ireland was examined among a sample of (N=125) individuals availing of long-term residential services.

Proportion of residents reporting: Group Home Village Campus No medication and no seizures 84.5% 65.6% Seizures controlled by medication 10.3% 15.6% Seizures less than monthly 3.4% 7.8% One or more seizure per month 1.7% 10.9%

Walsh, P.N., Linehan, C., Hillery, J., Durkan, J., Emerson, E., Roberston, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., Knapp, M., Järbrink, Netten, A., (2000). Quality and Costs of Residential Settings Provided for Irish Adults with Intellectual Disability. Centre for Disability Studies, University College Dublin


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ITALY

From a study of 209 subjects with Intellectual Disabilities in Italy (150 of whom are in residential care) the proportion of men and women with epilepsy was determined:

Epilepsy Male Female Total 37.1% 39.9% 38.0%

The proportion of individuals within each category of intellectual disability who have epilepsy was also determined:

Level Mild Moderate Severe Profound Total 26.2% 26.0% 49.1% 80.8% 37.8%

Oasi Institute (preliminary data)

LUXEMBOURG

No data available.

NETHERLANDS

The following data are the result of a study on 1,602 people with intellectual disability living in institutions or group homes in North Brabant and Limburg, the two southern provinces of the Netherlands. The table presents prevalence of epilepsy among people with Down's syndrome (DS+, N= 243) and people with intellectual disabilities due to other causes (DS-, N=849):

0-19 years

20-29 years

30-39 years

40-49 years

50-59 years

>60 years

Total:

Epilepsy: Down’s Syndrome 4.9 - 2.1 16.7 21.7 36.4 10.7 Other Intellectual Disability 33.3 24.3 21.9 18.5 12.2 7.2 17.4

Health problems of people with Intellectual Disability, Aspects of morbidity in residential settings and in primary health care, H.M.J. van Schrojenstein Lantman-de Valk


269

SPAIN

A number of sample studies examining the prevalence of epilepsy among service users with intellectual disability in Spain reveal varying estimates ranging from 10% to estimates in excess of 20%. In a study of 962 individuals with intellectual disability resident in psychiatric hospitals, approximately one in four (N=237; 24.6%) were reported to have epilepsy. A study of 130 individual with intellectual disability aged between 18 and 65 years attending a Vocational centre of the “Asociación para la Promoción del Minusválido” (PROMI) reported a lower prevalence estimate for epilepsy with only 14 individuals (10.7%) being identified with epilepsy. Finally, a study of 129 individuals with intellectual disability attending a Vocational Centre at Afanas, Jerez, reported a prevalence of 22.4% (N=29) of service users having epilepsy.

Servei Catalá de la Salut (CatSalut). Grupo de trabajo sobre la atención en salud mental a las personas con retraso mental. Necesidades de salud mental en personas con discapacidad intelectual (SM-DI). 2002. Salvador-Carulla L, Rodríguez-Blázquez C, Rodríguez de Molina M, Pérez-Marín J, Velázquez R. Hidden Psychiatric Morbidity in a Vocational Programme for People with Intellectual Disability. 2000. Almenara Barrios J, García González-Gordon R, Novaldos Ruíz JP, Merello Martel B, Abellán Hervás MJ, García Ortega C. Evaluación Médica y Psicosocial de una Población Adulta con Discapacidad Intelectual. Revista Española de Salud Pública. 1999.

SWEDEN

According to Parents’ estimates of their school aged children with intellectual disability, approximately one in four 25% had epilepsy. A study of 1,478 individuals with intellectual disability conducted in 1996 indicated that 296 (20%) had epilepsy.

Report from the county of Halland (translation for Pomona)

UNITED KINGDOM

In an examination of the prevalence of epilepsy and associated health service utilization among people with intellectual disability, registers for epilepsy and intellectual disability were created using a range of datasets. Of 1,595 people with an intellectual disability, 257 (16.1%) had epilepsy.

Morgan et al (2003) prevalence of Epilepsy and Associated health utilization and mortality among patients with intellectual disability. Am J M R 108, 293-300

2.2 ORAL HEALTH: Recent Data from Member States

270

RECENT HEALTH INDICATOR DATA FROM PARTICIPATING MEMBER STATES

2.2 ORAL HEALTH FOR PEOPLE WITH INTELLECTUAL DISABILITY MEMBER STATE

EVIDENCE OF ORAL HEALTH

SOURCE

AUSTRIA

No data available.

BELGIUM

The Department of Paediatric Dentistry and Special Care of UZ-Ugent has collected data on the oral health status of people with intellectual disability: Data on children with intellectual disability: An evaluation of oral cleanliness showed poor oral hygiene in 31.8% of the children. A considerable percentage of children with mild intellectual disability did not brush daily (22.1%) and did not receive help with tooth-brushing from their parents or carers. Data on adults with intellectual disability: Dental treatment lag was found in a group of 300 adults; only 55% of the present caries were treated. Current status of the mouth revealed an earlier exaggerated extraction therapy. Calculus was present in 75% of the cases. A discrepancy was found between the effects of efforts and the actual dental health. In 78% of the cases the brushing is supported, while 40% of the cases dental health is not satisfactory. In 40% of the cases dental plaque was noticed, foetor ex ore (30%) and swollen or bleeding gingiva (20%). The report also revealed that only 26% of residential facilities employed a dentist.

(Gizani, Declerck et al. 1997) (Martens, Cauwels et al. 2001) (Kint, Martens et al. 1991)

DENMARK

A number of reports conducted in Denmark have recommended the need for special attention toward dental health status for people with intellectual disability. Since these surveys the dental health system for people with intellectual disability in Denmark has improved.

Russell, B. G (1996) Mental retardering – psykisk udviklingshæmning. Tandlægebladet 100/14:646-653 Vigild, M. (1983). Tandsundheden hos psykisk udviklingshæmmede børn og unge.


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Licentiatafhandling, København Hørup, N., (1993). Analyse af behovet for tandpleje for personer med vidtgående fysiske og psykiske handicap i Ribe amt. Rapport Ribe amt.

FINLAND

Data regarding the use of oral health services in Finland is available, however it is not specific to people with intellectual disability:

1998 1999 2000 2001 Dental care visits 4,928,093 4,910,297 4,848,809 4,906,681 /1 000 inhabitants 961 951 936 946

www.stakes.info/files/pdf/Raportit/ Taskutieto_2003eng.pdf

FRANCE

A number of recent French studies have examined oral health issues among people with intellectual disability: Hennequin, Faulks & Roux (2000) investigated the ability of carers and dental professionals to estimate treatment need among a group of children and adults with intellectual disability. A retrospective study of 103 patients who have received restorative dental treatment under general anaesthetic was undertaken. The results show that treatment needs was severely underestimated by both carers and dentists. Hennequin & Allisson (2000) examined the duration of time between the first symptom of oral problems recognized by carers and the first contact the person with intellectual disability had with the dental professional. The time periods span between 2 weeks to 18 months with a mean of 3.7 months. Allison, Hennequin & Faulks (2000) compare levels of dental care utilization, receipt of dental services, and oral hygiene habits between a sample of individuals with Down’s Syndrome and their siblings. Findings revealed that those participants with Down’s Syndrome were significantly more likely to have difficulty accessing both medical and dental services. In addition, parents were almost twice as likely to report problems finding dental services for their child with Down’s Syndrome as they were medical services.

Hennequin, M., Faulks & Roux D. (2000). Accuracy of estimation of dental treatment need in special care patient. Journal od Dentistry, 28, 131-136. Hennequin, M. & Allison, P.J. (2000). Besoins de santé spécifiques et prise en charge universelle: l'inadéquation en santé bucco-dentaire. Revue Prévenir, 39, 197-200. Allison, P.J., Hennequin, M. & Faulks, D. (2000). Dental access among individuals with Down syndrome in France. Special Care in Dentistry, 20(1), 28-34.


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Hennequin, Allison & Veyrune (2000) report that children with Down’s Syndrome have significantly increased odds for poor chewing, belching while eating, constipation, habitually protruding tongue, bad breath, tooth grinding, and sleeping with their mouth open. The results suggest a high level of dental pathology that remains untreated.

Hennequin, M., Allison, P.J. & Veyrune, JL (2000). Prevalence of oral problems in a group of individuals with Down syndrome in France. Developmental Medicine & Child Neurology, 42, 691-698.

GERMANY

Results of a national study among organisations for people with disability reported on outpatient and inpatient dental contact of 98,737 people with disabilities in Germany. The findings revealed that over half (54.3%) were in receipt of regular dental treatment. A further 35.8% did not have regular treatment, while no information was available for the remaining 9.9% of the sample.

Brokmeier, J.; Müller, J.; Strobel-Müller,B.; Wetzel, W.-E.(1981): Problemdarstellung zur zahnärztlichen Behindertenversorgung, In: Geistige Behinderung, 2000, S.91f.

IRELAND

The Irish Society for Disability and Oral Health was established to consult with disability groups to identify their needs and the demands of people with disabilities and to encourage research in the field of oral healthcare for people with disabilities. A report on dental health services for those with intellectual disability is due for publication in early 2005 by the Department of Health & Children. The report details a prevalence study of oral health status and service usage among a national sample of over 800 children and adults with intellectual disability who participated in a national oral health examination prevalence study. Preliminary data (personal communication) suggests that while dental decay is similar for those with and without intellectual disability, there is a greater level of unmet dental health care need among those with intellectual disability.

Oral Health Services Research Centre, University College Cork.

ITALY

No data available.

LUXEMBOURG

An annual review of oral health among service users revealed 7.1% were in receipt of medication to meet their oral health needs.

Fondation A.P.E.M.H. Centre Nossbierg B.P. 331, L-4004 Esch-sur-Alzette


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NETHERLANDS No data available.

SPAIN

The oral health status of 166 adults with mild to moderate intellectual disability was examined. The mean DMFT index for the whole sample was 5.97. No significant differences were reported between the DMFT index and its components for those participants who engaged in a weekly fluoride mouth rinse (n = 117) and those who did not (n = 49). An analysis of the results revealed a moderately high prevalence of caries in the whole sample that was lower than that in a national survey. The authors suggest this finding could reflect strict dietary control of sugar in the study population.

Rodriguez Vazquez C, Garcillan R, Rioboo R, Bratos E. Prevalence of dental caries in an adult population with mental disabilities. Spec care Dentist. 2002; 22 (2): 65-9

SWEDEN

A number of studies indicate that dental health is well looked after in Sweden and that the situation improved after de-institutionalisation. Individuals with more severe levels of intellectual disability and those with Down’s Syndrome report an increased risk for impaired oral health. Less restrictive living and a mild degree of intellectual disability were correlated with higher caries prevalence.

UNITED KINGDOM

No data available.

2.3 BMI: Recent Data from Member States

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2.3 BODY MASS INDEX (BMI) FOR PEOPLE WITH INTELLECTUAL DISABILITY MEMBER STATE

EVIDENCE OF BODY MASS INDEX

SOURCE

AUSTRIA

A sample study of individuals with intellectual disability in Austria reveals a high proportion being classified with a BMI in the ‘overweight’ or ‘obese’ category. The analysis also revealed that this pattern is more evident among women with intellectual disability than men.

BMI Category % Underweight (BMI < 20) 2% Normal (BMI 20-25) 26% Overweight (BMI 25 to 30) 33% Obese (BMI >30) 39%

BMI Male Female Normal 35.9% 17.8% Overweight 24.6% 52.2%

In a study of older adults (50-69 years) with intellectual disability (N=129), one in three participants (35.2%) were identified as having ‘weight problems’.

Weber, G & Rett, A. (1991): Down Syndrom im Erwachsenenalter. Verlag Hans Huber, Bern. Klicpera & Bensch (2001): The Needs of Elderly People with Intellectual Disability in Living Quaters. Senior Flat Sharing Communities or getting old in familiar Environment. (Die Bedürfnisse älterer Menschen mit geistiger Behinderung im Wohnbereich. Altenwohngemeinschaft oder alt werden in gewohnter Umgebung?) Heilpädagogik 4/2001, 1-8

BELGIUM

No data available.


275

DENMARK

No data available.

FINLAND

Body mass index (BMI) was calculated at age 20 for 112 individuals with intellectual disability, all of whom were born in 1966. The mean BMI for the group did not deviate significantly from that for an average Finnish population at age 20-29 years. The authors report that 41.5% of those with mild and moderate levels of intellectual disability (IQ 35-70) and 28.6% of those with severe to profound levels of intellectual disability (IQ less than 35) were of normal weight (BMI 20-24). A further 9.8% of the entire sample was moderately obese (BMI greater than 30) and 7.1% seriously so (BMI greater than or equal to 32). A total of 29.5% of the sample were underweight (BMI less than 20), a condition which the authors identify as a problem among those with more severe levels of disability and a possible consequence of the different feeding and dietary problems connected with multiple disabilities.

Simila S, Niskanen P., (1991). Underweight and overweight cases among the mentally retarded. J Ment Defic Res. Apr;35 ( Pt 2):160-4.

FRANCE

No data available.

GERMANY

No data available.

IRELAND

A study examining the quality of life of residents (N=125) in two differing residential settings, community group homes and campus style village residents, profiled residents’ BMI:

Men’s Body Mass Index % of male residents in BMI category Group

Home Village Campus

Underweight (BMI < 20) 25.9% 15.9% Normal (BMI 20-25) 29.6% 29.5%

Walsh, P.N., Linehan, C., Hillery, J., Durkan, J., Emerson, E., Roberston, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., Knapp, M., Järbrink, Netten, A., (2000). Quality and Costs of Residential Settings Provided for Irish Adults with Intellectual Disability. Centre for Disability Studies, University College Dublin


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Overweight (BMI 25 to 30) 14.8% 31.8% Obese (BMI >30) 29.6% 22.7%

Women’s Body Mass Index % of female residents in BMI category Group

Home Village Campus

Underweight (BMI < 20) 8.0% 20.0% Normal (BMI 20-25) 20.0% 15.0% Overweight (BMI 25 to 30) 28.0% 20.0% Obese (BMI >30) 44.0% 45.0%

ITALY

Preliminary data from a small sample study (N=22) reveals that 30% of the sample was classified in the ‘obese’ category.

BMI Categroy % Overweight (BMI 25-29.9) 5% Obese 1st degree (BMI 30-34.9) 5% Obese 2nd degree (BMI 35-39.9) 10% Obese 3rd degree (BMI > 40) 15%

Greco D. et al. Oasi Institute, 2003 (preliminary data)

LUXEMBOURG

A study of 56 adults with intellectual disability in long term residential care (Centre Nossbierg) classified the majority of residents as either being within the ‘normal’ or

Fondation A.P.E.M.H. Centre Nossbierg


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‘underweight’ BMI categories.

BMI Category Underweight (BMI < 20) 41.2% Normal (BMI 20-25) 46.4% Overweight (BMI 25 to 30) 12.4% Obese (BMI >30) 0%

B.P. 331 L-4004 Esch-sur-Alzette

NETHERLANDS

Prevalence rates of people with intellectual disability attending general practice:

Overweight (BMI > 25): Odds ratio 4.1, compared with 2.3 for the general population. Obesity (BMI > 30): Odds ratio 8.8, compared with 3.5 for the general population.

Health problems in people with intellectual disability in general practice, H.M.J. Lantman, 1996.

SPAIN

No data available.

SWEDEN

No data available.

UNITED KINGDOM

No data available.

2.4 MENTAL HEALTH: Recent Data from Member States

278


2.4 MENTAL HEALTH FOR PEOPLE WITH INTELLECTUAL DISABILITY MEMBER STATE

EVIDENCE OF MENTAL HEALTH

SOURCE

AUSTRIA

The prevalence of psychiatric disorders was investigated among a sample of 154 adults (over 20 years) with intellectual disability using the GQ (Gerontological Questionnaire).

Mental disorders 11.0 % Behavioural disorders 12.3 % Both disorders 12.3 %

A study examining mental health among older adults (50-69 years) with intellectual disabilities measured both the prevalence and intensity of participants’ mental health and challenging behaviours:

Prevalence Intensity Restlessness 62.8% 16.4 Stereotypy and own rituals 51.9% 13.4 Confusion 51.9% 21.2 Sequestration 51.2% 13.9 Listlessness 50.4% 23.1 Depressive disorder 50.4% 4.8 Uncooperative behaviour, not accepting rules 48.8% 25.4 Disorientation 44.2% 26.3

Weber, G. (1997): Intellectual disability: basics, clinical-psychological diagnostics in the adulthood. (Intellektuelle Behinderung: Grundlagen, klinisch-psychologische Diagnostik im Erwachsenenalter.) WUV Verlag, Wien Klicpera & Bensch (2001): The Needs of Elderly People with Intellectual Disability in Living Quaters. Senior Flat Sharing Communities or getting old in familiar Environment. (Die Bedürfnisse älterer Menschen mit geistiger Behinderung im Wohnbereich. Altenwohngemeinschaft oder alt werden in gewohnter Umgebung?) Heilpädagogik 4/2001, 1-8 4/2001, 1-8


279

Socially unadjusted behaviour 42.6% 16.4 Sleeplessness 41.1% 7.7 Anxiousness 41.1% 9.6 Passivity and unresponsiveness 40.3% 15.4 Disturbing activities from others 39.5% 11.7 Auto-aggression 31.0% 10.0 Other mental health problems and challenging behaviour 1.6% 1.0

BELGIUM

Belgian data has been collected as part of a European study on depression and other psychiatric problems however no institutionalised people were interviewed and information on intellectual disability was not gathered.

Prof. Demyttenaere

DENMARK

The mental health status of a representative sample of 302 people with intellectual disability (over 20 years) was profiled in one Danish county.

Schizophrenia 1.3% Affective disorder 1.7% Dementia 3.6% Early Childhood autisme 3.6% Psychosis of uncertain type 5.0% Neurosis 2.0% Behavior disorders 10.9% Total 28.1%

Lund J. (1985). The prevalence of psychiatric morbidity in mentally-retarded adults. Acta Psychiatrica Scandinavica. 72:563-570, 1985.

FINLAND

Prevalence rates and types of psychiatric disorders were examined among a group of 155 children with intellectual disability. Medical information obtained from case files indicated that psychiatric

Koskentausta T, Iivanainen M, Almqvist F. (2002). Psychiatric disorders in children


280

disorder was diagnosed for 11% of patients. A re-examination of the case files revealed psychiatric disorder for 33%. The criteria of a psychiatric ICD-10 diagnosis were fulfilled by 23%, and a further 10% had an unspecified mental disorder. The most common diagnoses were pervasive developmental disorders and hyperkinetic disorders.

with intellectual disability. Nord J Psychiatry. 56 (2): 126-31.

FRANCE

No data available.

GERMANY

A study by Lotz (1994) estimates that approximately 30-40% of people with intellectual disability have psychiatric disorder. Differences in type and prevalence rate of psychiatric disorder were found with regard to age and severity of intellectual disability. The prevalence of depressive disorders was examined for a sample of 798 adults with intellectual disability in a variety of residential settings. This study reported prevalence rates for supported living and group homes (less than 48 residents), residential facilities with more than 48 residents (RF), and a long-stay department of a hospital (LDH).

Major Depression

Dysthymia Adaptational disorder

SL/GH (n=454) 2,0% 1,3% 0,9% RF (n=277) 2,2% 1,4% 0,4% LKH (n= 67) 7,5% 0,0% 1,5% Total 2,5% 1,3% 0,8%

W. Lotz (1994): Psycho-therapeutische Behandlung geistig Behinderter Menschen, Bern, Huber. Wolfgang Meins (3/1995):Depression und geistige Behinderung, Ausgewählte Ergebnisse einer Studie. In: Geistige Behinderung, S.201-210.

IRELAND

From study of 125 adults with intellectual disability in long term residential care:

Walsh, P.N., Linehan, C., Hillery, J., Durkan, J., Emerson, E., Roberston, J., Gregory, N., Hatton, C., Kessissoglou, S.,


281

Proportion of residents reaching threshold for: Group Home Village Campus Affective Neurotic Disorder 3.4% 3.1% Organic Disorder None None Psychotic Disorder 3.4% 4.7%

Hallam, A., Knapp, M., Järbrink, Netten, A., (2000). Quality and Costs of Residential Settings Provided for Irish Adults with Intellectual Disability. Centre for Disability Studies, University College Dublin

ITALY

From a study of 209 subjects with Intellectual Disabilities in Italy (150 of whom are in residential care) the proportion of men and women with psychiatric disorder was determined:

Psychiatric Disorder

Male Female Total

36.3% 26.5% 32.4% The proportion of individuals within each category of intellectual disability who have psychiatric disorder was also determined:

Level Mild Moderate Severe Profound Total 28.3% 33.3% 46.6% 7.7% 32.1%

Oasi Institute (preliminary data)

LUXEMBOURG

A study of 56 adults with intellectual disability in long term residential care (Centre Nossbierg) examined the prevalence of organic and psychotic disorder:

Organic Disorder 23.2% Psychotic Disorder 21.4%

Fondation A.P.E.M.H. Centre Nossbierg B.P. 331 L-4004 Esch-sur-Alzette


282

NETHERLANDS

The following data are the result of a study on 1,602 people with intellectual disability living in institutions or group homes in North Brabant and Limburg, the two southern provinces of the Netherlands. The table presents prevalence of psychiatric disorders in people with Down's syndrome (DS+, N= 243) and people with intellectual disability due to other causes (DS-, N=849):

Prevalence of psychiatric disorder in %

0-19 years

20-29 years

30-39 years

40-49 years

50-59 years

>60 years

Total:

Affective disorder: Down’s Syndrome - 4.7 - 3.7 - - 1.7 Other intellectual disability 2.7 4.1 5.3 8.4 8.2 8.2 6.6 Other psych. Disorders: Down’s Syndrome 4.9 14.0 2.1 13.0 4.3 9.0 7.8 Other intellectual disability 13.2 17.0 21.9 20.6 19.4 14.8 17.9

Health problems of people with Intellectual Disability, Aspects of morbidity in residential settings and in primary health care, H.M.J. van Schrojenstein Lantman-de Valk

SPAIN

A study of 143 adults with intellectual disability attending day services in Cordoba identified 28 individuals (19.5%) with psychiatric disorder. Psychiatric morbidity among a large sample of individuals with intellectual disability resident in a psychiatric hospital has also been examined and reported high levels of psychiatric disorder among this population:

Psychiatric morbidity 741 (77%)

No psychiatric morbidity 221 (23%) A full breakdown of the distribution of these disorders is listed below. Note that some individuals were identified as having more than one psychiatric condition.


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Behavioural disorders 328

Personality disorders 156

Specials syndromes 90

Schizophrenia 84

Child Psychosis 66

Drugs abuse 26

Neurotics disorders 25

Others psychosis not organic 25

Affective psychosis 18

Organic psychosis 12

Senile psychosis 8

Adaptative reaction 6

Sexual disorders 5

Emotional childhood disorders 5

Alcohol dependence 4

Psychosomatic disorders 4

Delusional disorders 3

Organics disorders not psychotic 3

Depressive disorders not otherwise classified 2

SWEDEN

In a study from 1996: Autism spectrum disorders were identified in 19.8% of children with intellectual disability. Autistic disorder (as defined by DSM III R) was identified 8.9% and increased to 11.7% in a two- year follow up study. In a study from 2004: The overall occurrence of mental health problems in adults with intellectual disability


284

ranged from 34% to 64%. The most common mental health problems were aggressive, self-injurious behaviours, signs of depression, anxiety or adjustment problems. The occurrence of adults with intellectual disability among patients receiving out- or in-patient psychiatric care was approximately 1%. Between 70% and 90% of these people were classified as having mild intellectual disability. In a study from 1987: Mental health problems in primary health care as seen by doctors were observed in 17% of the patients. Sex differences were similar: 20-21% of female patients and 14% of male patients had mental health problems.

UNITED KINGDOM

An audit of 318 adults and 79 children with intellectual disability attending British Primary Care system services revealed approximately one in every two individuals experiencing psychiatric difficulties.

Proportion reaching threshold for: Yes No Mental illness (PIMRA) 46% 54%

Proportion reaching threshold for: Yes No Emotional and behavioural disturbance (DBC) 52% 48%

Baxter et al –primary care evaluation audit and research in learning disabilities. 2002 WCLD Meridian Court North Road Cardiff UK.

2.5. SENSORY IMPAIRMENT: Recent Data from Member States

285


2.5. SENSORY IMPAIRMENT FOR PEOPLE WITH INTELLECTUAL DISABILITY MEMBER STATE

EVIDENCE OF SENSORY IMPAIRMENT

SOURCE

AUSTRIA

A study profiling the health status of 129 adults with intellectual disability aged between 50 and 69 years (71 male and 58 female) revealed that while two-thirds of the sample had some form of visual impairment, prevalence rates for hearing impairment were lower, with one in three individuals experiencing this condition.

Visual Impairment N Minor 23% Moderate 26% Severe 17% Blind -- Total 66%

Hearing Impairment N Minor 17% Moderate 5% Severe 10% Total 32%

Mühlberger, Peter (1998): Elderly with ID in Residential Centres of “Jugend am Werk” and “Caritas” in Vienna and Surrounding Areas. (Ältere Menschen mit geistiger Behinderung in den Wohneinrichtungen von Jugend am Werk und Caritas im Raum Wien-Umgebung.) Diplomarbeit an der Universität Wien


286

Another study examining sensory deficit amongst older adults also reported higher prevalence figures for visual impairment in comparison with hearing impairment:

Visual Impairment 37.5% Hearing Impairments 14.8%

Klicpera & Bensch (2001): Die Bedürfnisse älterer Menschen mit geistiger Behinderung im Wohnbereich. Altenwohngemeinschaft oder alt werden in gewohnter Umgebung? Heilpädagogik 4/2001, 1-8

BELGIUM

No data available.

DENMARK

A survey from 1989 among adults with intellectual disability living either with their parents or independently showed a higher prevalence of hearing disorders than the normal population. It also revealed that hearing disorders among this population can remain undetected and untreated.

Visual acuity N % LAPB/WHO 1.0 - >=0.5 529 63% Normal 0.3 60 7% V.I. mild 0.25 - >= 0.10 140 17% V.I. moderate/V.I. mild to moderate 0.10 18 2% Soc. Blind/V.I. moderate <=0.08 - no perception of light 52 7% V.I. severe to profound No ascertainment 33 4% Total 832 100%

Agnete Parving: Hørelsen hos voksne, hjemmeboende, psykisk udviklingshæmmede borgere i Københavns kommune. Audiologisk Afdeling, Bispebjerg Hospital 1989

FINLAND

No data available.

FRANCE

No data available.


287

GERMANY

Information about co-morbidity to intellectual disability is rare in German health statistics. The statistics reported below suggest an under-reporting of sensory deficits:

5,845 of the cases have blindness and other severe vision problems 3,666 of the cases have severe hearing and speech problems.

Statistisches Bundesamt 2003

IRELAND

From study of 125 adults with intellectual disability in long term residential care:

Proportion of residents with sensory deficits: Group

Home Village Campus

% of sample reported to have: Hearing impairment 3.4% 0 Visual impairment 1.7% 4.6% Both impairments 0 0

Walsh, P.N., Linehan, C., Hillery, J., Durkan, J., Emerson, E., Roberston, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., Knapp, M., Järbrink, Netten, A., (2000). Quality and Costs of Residential Settings Provided for Irish Adults with Intellectual Disability. Centre for Disability Studies, University College Dublin.

ITALY

No data available.

LUXEMBOURG

A study of 56 adults with intellectual disability in long term residential care (Centre Nossbierg) reported prevalence figures of:

Hearing impairment 8.9% Visual impairment 17.8% Both impairments 1.7%



288

NETHERLANDS

A consensus statement has been developed by the Dutch associations of physicians, GPs, opthalmologists, paediatricians, youth health physicians and orthoptists advocating the screening of visual impairment among people with intellectual disability. The following data are the result of a study on 1,602 people with intellectual disability living in institutions or group homes in North Brabant and Limburg, the two southern provinces of the Netherlands. The table presents prevalence of health problems in people with Down's syndrome (DS+, N= 243) and people with mental handicaps due to other causes (DS-, N=849):

0-19 years

20-29 years

30-39 years

40-49 years

50-59 years

>60 years

Total:

Visual impairment: Down’s Syndrome 15.0 23.3 36.2 31.5 59.1 63.6 34.7 Other intellectual disability

14.9 8.8 11.6 17.6 20.2 25.7 17.2

Hearing impairment: Down’s Syndrome 14.6 14.0 12.8 24.1 37.0 72.7 23.1 Other intellectual disability

3.9 5.8 6.3 6.5 15.2 19.2 11.0

Richtlijnen voor actieve opsporing van visuele stoornissen bij mensen met een verstandelijk handicap, L.M.D. Nagtzaam, H.M. Evenhuis, 1999, NTVG Health problems of people with Intellectual Disability, Aspects of morbidity in residential settings and in primary health care, H.M.J. van Schrojenstein Lantman-de Valk

SPAIN

A study of 962 individuals with intellectual disability resident in Psychiatric Hospital in 2002 recorded sensory deficits among residents:

N % Hearing Impairment 32 3.34% Visual Impairment 40 4.15% Total 72 7.48%

Servei Catalá de la Salut (CatSalut). Grupo de trabajo sobre la atención en salud mental a las personas con retraso mental. Necesidades de salud mental en personas con discapacidad intelectual (SM-DI) 2002.


289

SWEDEN

Reporting from a group of parents regarding their children with intellectual disability estimated that over half (52%) had visual impairment while over one fifth (22%) had limitations of hearing.


UNITED KINGDOM

A survey of carers of 318 adults with intellectual disability identified within the British Primary Care system gathered data on sensory impairment using the General Practitioner Health Check:

Hearing Major problem 5% Carer concerned 1% Minor hearing problem 13% Normal hearing 81%

Vision Major problem 13% Minor 46% Normal 40%

Baxter et al –primary care evaluation audit and research in learning disabilities. 2002 WCLD meridian court north road Cardiff UK.

2.6. MOBILITY: Recent Data from Member States

290


2.6 MOBILITY FOR PEOPLE WITH INTELLECTUAL DISABILITY MEMBER STATE

EVIDENCE OF MOBILITY

SOURCE

AUSTRIA

An investigation of 129 older adults with intellectual disability in Austria (aged between 50 and 69 years; 71 male and 58 female) revealed that the majority were mobile:

Mobile 92 71.8% Able to walk with, needs help with stairs 33 25.8% Able to walk with walking frame 1 0.8% Able to drive his wheelchair 2 1.6% Total 128 100%

Mühlberger, Peter (1998): Elderly with ID in Residential Centres of “Jugend am Werk” and “Caritas” in Vienna and Surrounding Areas. (Ältere Menschen mit geistiger Behinderung in den Wohneinrichtungen von Jugend am Werk und Caritas im Raum Wien-Umgebung.) Diplomarbeit an der Universität Wien

BELGIUM

No data available.

DENMARK

No data available.

FINLAND

No data available.

FRANCE

No data available.

GERMANY

No data available.


291

IRELAND

No data available.

ITALY

No data available.

LUXEMBOURG

From study of 56 adults with intellectual disability in long term residential care (Centre Nossbierg):

Use of wheel chair 7 persons 12.4% Requires help walking 5 persons 8.9% Requires regular remedial gymnastic 17 persons 30.4%


NETHERLANDS

A study conducted by the Social and Cultural Planning Office of the Netherlands surveyed 200 institutions providing services for adults with intellectual disability. These services included General Institutions (including socio-residences), Family Replacement Homes (including independent living with intensive support), Day-care centre for elderly (adults) (DVO) and Social Labour Facilities SWV). Mobility status findings are presented below:

Family Independent GVT* AIVG** Independent movement within the district: Yes 68 96 77 16 No, but would be possible 12 1 8 8 No 20 3 15 76 Travelling independently with public transport: Yes 41 79 43 6


292

No, but would be possible 19 13 17 5 No 40 8 40 89

*GVT: Group Home **AIVG: General Institutions for people with intellectual disability

SPAIN

Data relating to 962 individuals with intellectual disability resident in Psychiatric Hospital in 2002 indicates that approximately one in ten (N=90; 9.36%) had mobility difficulties.

Servei Catalá de la Salut (CatSalut). Grupo de trabajo sobre la atención en salud mental a las personas con retraso mental. Necesidades de salud mental en personas con discapacidad intelectual (SM-DI). 2002.

SWEDEN

A survey of parents of school children with intellectual disabilities revealed that 39% had limitations of mobility.


UNITED KINGDOM

A study of 318 adults identified in British Primary Care system examined mobility using the General Practitioner Health Check:

Fully mobile 79% Immobile 16% Mobile with aids 5%

Baxter et al –primary care evaluation audit and research in learning disabilities. 2002 WCLD meridian court north road Cardiff UK.

This report was produced by a contractor for Health & Consumer Protection Directorate General and represents the views of the contractor or author. These views have not been adopted or in any way approved by theCommission and do not necessarily represent the view of the Commission or the Directorate General for Health and Consumer Protection. The European Commission does not guarantee the accuracy of the dataincluded in this study, nor does it accept responsibility for any use made thereof.

recent health indicator data from participating … · 2006-10-31 · 2.1 epilepsy: recent data...

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