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Summary This two-phase, qualitative study aims to obtain an overview of stakeholders in the network of people with intellectual disabilities (ID) and their perceived facilitating and hindering factors, expectations, and perceived roles and responsibilities with regard to health promotion. In phase 1, four workshops were conducted to provide insight into involved stakeholders. In phase 2, 29 semi-structured interviews were conducted with stakeholders regarding their views on health promotion. Data were analysed using stakeholder matrices and a combination of domain and thematic analysis. Daily caregivers were identified as the most important and influential stakeholders. Interviewed stakeholders perceived barriers to a healthy lifestyle as relating mainly to the person with ID and, although they stated that people with ID need support to be able to live healthily, there was ambiguity about roles and responsibilities for providing this support. Daily caregivers are not properly facilitated to support a healthy lifestyle. Stakeholders expressed the need for a culture change towards a greater health promotion ethos in care for people with ID. A facilitating context is needed in which the social network supports autonomy and offers opportunities to adapt to physical, social and emotional challenges. Stakeholders see the importance of, and are willing to support, healthy behaviour. They are hindered by a lack of a shared vision and united system in which all stakeholders know their roles and responsibilities. Promotion of a healthy lifestyle should be part of every service provider employee’s job and propagated throughout the organization as part of its mission and vision.

Background There is a need for a specific tool that supports healthcare professionals in timely identifying people with intellectual disabilities (ID) in need of palliative care. Therefore, we developed PALLI: a tool for screening deteriorating health, indicative of a limited life expectancy. Aims We evaluated feasibility, construct validity and predictive validity of PALLI. Methods 190 people with ID likely to be in need of palliative care were included. Physicians and daily care professionals (DCPs) completed PALLI and provided information on health outcomes at baseline, after 5–6 months and after 10–12 months. Linear Mixed Models and Generalized Linear Mixed Models were used to test validity. Results Feasibility was adequate: physicians and DCPs were able to answer most items with ‘yes’ or ‘no’ and within a short amount of time. Construct validity was promising: a higher PALLI score at baseline was related to a higher level of decline in health, a higher symptom burden, a lower quality of life and more ADL-dependency at baseline. Predictive validity: only a higher physician-reported PALLI score at baseline significantly increased risk of death within 12 months. Conclusions PALLI shows promising feasibility and validity and has potential as a tool for timely identifying people with ID who may benefit from palliative care.

Background People with intellectual disabilities (ID) experience health disparities and are less likely to undergo recommended age- and gender-specific screening and health promotion. New diagnoses are frequently missed. Assessments with the aid of health assessment instruments are a way to address these problems. Aim The aim of this review is to find the available health assessment instruments for people with ID used in primary care and evaluate their quality. Methods We conducted an electronic literature search of papers published between January 2000 and May 2016. After a two-phase selection process (kappa: 0.81 and 0.77) we collected data from the 29 included peer-reviewed articles on the following four domains; development , clinimetric properties (i.e. validity, reliability, feasibility, acceptability) , content (i.e. ID-related health problems, prevention and health promotion topics) and effectiveness of the instruments. Results/Conclusions We distinguished 20 different health assessment instruments. Limited information was found on the development of the instruments as well as on their clinimetric properties . The content of the instruments was rather diverse. The included papers agreed that health assessment instruments are effective. However, only three instruments evaluated effectiveness in a randomised controlled trial. Patients with ID, carers and general practitioners (GPs) generally appreciated the health assessment instruments. Implication Two instruments, “Stay well and healthy −Health risk appraisal (SWH-HRA)”and the ”Comprehensive Health Assessment Programme (CHAP)”, appeared to have the highest quality. These instruments can be used to construct a health assessment instrument for people with ID that meets scientific standards.

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was ‘Patient-related considerations when issuing DNAR orders’. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of ‘The decision-maker role’ was as important as that of ‘The decision procedure in an organisational context’. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Background People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD. Method MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted ‘risk of bias tool’ for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available. Results In total, 20 studies were included and analysed. In the meta-analysis, a homogeneous prevalence rate of 70% (CI 65–75%) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity. Conclusion This review provides an overview of the current state of the art research on the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.

BackgroundPeople with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. MethodWe conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12months or were chronic were recorded. ResultsThe records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. ConclusionsThe results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.

Little is known about the involvement of nurses in the process of making end-of-life decisions for people with intellectual disability (ID). The aim of this study was to clarify this process from the perspective of nurses. This qualitative study involved nine semistructured interviews with nurses working in chronic care, conducted after the deaths of patients with ID in the Netherlands. The interviews were transcribed verbatim and analyzed using Grounded Theory procedures. The core characteristic of the position of the nurses and of the way they supported the patient was Being at the center of communication. Related categories of topics emerging from the interviews were Having a complete picture of the patient, Balancing involvement and distance, Confidence in one's own opinion, and Knowledge about one's own responsibility, all of which were focused on the patient. This focus on the patient with ID might explain why the nurses could make valuable contributions to such an important subject as end-of-life decisions. People with ID themselves were not involved in the decisions. The nurses were not always aware who was ultimately responsible for the end-of-life decisions. Nurses are in a unique position to support the process of end-of-life decision-making. It is important to use their knowledge and give them a more prominent position in this decision-making process. It should be clear to all involved who is ultimately responsible for making the end-of-life decisions.

BACKGROUND: Behavioural problems are frequently reported in residential care for people with an intellectual disability (ID) in particular when they are additionally diagnosed with autism spectrum disorder (ASD). There are indications that impairment in cognitive shifting may be associated with problem behaviour. The objectives of this study were (1) to examine the relationship of cognitive shifting and severity of ASD symptoms with externalising problem behaviour in individuals with ID, with and without ASD, and (2) to examine whether a diagnosis based on shifting impairment is more predictive of externalising problem behaviour than an ASD diagnosis. METHOD: Participants consisted of adolescents and young adults with mild ID, with and without ASD (n = 41). Pearson intercorrelations were computed to explore the relationship between shifting impairment and severity of ASD symptoms on the one hand and ratings of externalising problem behaviour on the other hand. t-Tests were performed to analyse differences in externalising problem behaviour. RESULTS: Unlike ASD symptom severity, shifting scores were found to be associated with externalising problem behaviour, but only if shifting was measured using rating scales and not when using neuropsychological tasks. Externalising problem behaviour scores significantly differed when groups were classified according to shifting impairment (impaired vs. non-impaired) but not when they were classified according to ID and ASD diagnoses. CONCLUSIONS: It is proposed to use a cognition-based approach when analysing problem behaviour, thus concentrating not so much on ID and ASD diagnosis and their corresponding symptoms, but rather placing the focus on cognitive symptoms.

Item does not contain fulltext Aggressive behaviour is a major problem in individuals with an intellectual disability (ID) as well as in individuals with an Autism Spectrum Disorder (ASD). There are indications that suggest a link between cognitive shifting and aggression. In this study, reports of aggressive incidents of adolescents and young adults with different clinical diagnoses (ID, ID+ASD, ASD) were collected during 1 year, using the Staff Observation Aggression Scale-Revised. Whether they were diagnosed with ID, ASD or both; individuals who displayed aggression were found to face more cognitive shifting difficulties than non-aggressive individuals, while no significant differences were found on severity of ASD symptoms. Study results support the assumption that a cognition-based model for aggression may be more adequate than a diagnose-based model.

BACKGROUND: Executive functioning (EF) is important for adequate behavioural functioning and crucial for explaining symptoms of autism spectrum disorders (ASD) in individuals with normal intelligence, but is scarcely studied in individuals with ASD and intellectual disabilities (ID). We therefore study EF in an ID population by comparing performances on three frequently studied executive functions (shifting, inhibition and updating) between individuals with ASD and individuals without ASD. When studying ID populations, one should be aware of Spearman's Law of Diminishing Returns (SLODR), as it questions the possibility of measuring separate cognitive functions in ID populations. METHODS: Six EF tasks were administered to 50 individuals with mild to borderline ID, of which half was diagnosed with ASD. In order to investigate the distinctness of the three executive functions in this ID sample, the results on the six EF tasks were subjected to principal components analysis (PCA). Subsequently, a multivariate analysis of variance (MANOVA) was performed to assess differences between the ASD and non-ASD group on shifting, inhibition and updating. RESULTS: The PCA revealed the hypothesised EF trichotomy. MANOVA analysis showed no significant group differences on EF-performance. CONCLUSIONS: Three separate executive functions were measured in this ID population, but despite much evidence that individuals with ASD display more behavioural problems and the proven relevance of EF in behavioural functioning, no significant group difference was found on shifting, inhibition or updating. After this first effort to achieve more insight into EF of individuals with ASD and ID the relation between behavioural problems and EF will require further study.

Background The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures. Results Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision-making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long-standing knowledge of the patient's fragile health. Conclusions In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process.

Background Despite progress in the process of deinstitutionalisation, very little is known about the health conditions of people with intellectual disability (PWID) who live in large institutions and PWID living in small residential services, family homes or independent living within the community. Furthermore, there are no international comparison studies at European level of the health status and health risk factors of PWID living in fully staffed residential services with formal support and care compared with those living in unstaffed family homes or independent houses with no formal support. Methods A total of 1269 persons with ID and/or their proxy respondents were recruited and face-toface interviewed in 14 EU countries with the P15, a multinational assessment battery for collecting data on health indicators relevant to PWID. Participants were grouped according to their living arrangements, availability of formal support and stage of deinstitutionalisation. Results Obesity and sedentary lifestyle along with a number of illnesses such as epilepsy, mental disorders, allergies or constipation were highly prevalent among PWID. A significantly higher presence of myocardial infarctions, chronic bronchitis, osteoporosis and gastric or duodenal ulcers was found among participants in countries considered to be at the early stage of deinstitutionalisation. Regardless of deinstitutionalisation stage, important deficits in variables related to such medical health promotion measures as vaccinations, cancer screenings and medical checks were found in family homes and independent living arrangements. Age, number of people living in the same home or number of places in residential services, presence of affective symptoms and obesity require further attention as they seem to be related to an increase in the number of illnesses suffered by PWID. Discussion Particular illnesses were found to be highly prevalent in PWID.There were important differences between different living arrangements depending on the level of formal support available and the stage of deinstitutionalisation. PWID are in need of tailored primary health programs that guarantee their access to quality health and health promotion and the preventative health actions of vaccination programs, systematic health checks, specific screenings and nutritional controls. Extensive national health surveys and epidemiological studies of PWID in the EC member states are urgently needed in order to reduce increased morbidity rates among this population.

BACKGROUND: Worldwide contraception is frequently used by women for the prevention of conception to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID) the indications sources of referrals and relations with level of ID and age of the women concerned. METHODS: The study group consisted of 234 women aged between 15 and 59 years and residing at a Dutch service provider for persons with ID. Data were obtained via the pharmacy database attending physicians and individual medical files. RESULTS: Nearly one half (48% n = 112) of the 234 residential women used some method of contraception: 87 (78%) took pharmacological contraceptive methods 23 (20%) underwent surgical contraception and 2 (2%) both. Main reasons for contraception were problems with menstruation behaviour and/or prevention of pregnancy. Requests for contraception were initiated mainly by physicians and parents. Differences between users of different contraceptives with regard to age and level of ID were not statistically significant. CONCLUSIONS: Further studies should focus on the development and implementation of adequate health promotion materials on this subject. (c) 2011 The Authors. Journal of Intellectual Disability Research (c) 2011 Blackwell Publishing Ltd.

Background The aims of this study were (1) to determine to what extent body mass index (BMI), waist circumference, fat free mass index (FFMI) and skinfold thickness are feasible measurement options in people with intellectual disabilities (ID) to measure their weight status, and (2) to assess the level of agreement among these methods. Methods BMI, waist circumference, FFMI derived from the Bioelectrical Impedance Analyser and skinfold thickness were all determined in 76 people with intellectual disabilities. Results BMI and waist circumference could be measured in all subjects. Skinfold thickness and FFMI failed in, respectively, five and 14 people. In general, intertest reliabilities were low. For underweight people, the agreement was acceptable. Conclusions BMI and waist circumference were feasible measurement options. Agreements among the methods were low. Implications of these results are discussed.

Background Evidence suggests that people with intellectual disabilities experience secondary health conditions and report inequities in health status and access to health systems. Reliable information is essential to identify health disparities. A review of health interview and health examination surveys conducted in 17 European countries was undertaken to determine whether people with intellectual disabilities were represented. Method Using the online HIS HES database, 123 health surveys were scrutinized to determine whether they contained questions relevant to the Pomona 18 indicator set, and whether data could be extracted specifically on behalf of respondents with intellectual disabilities. Results Findings reveal that while items relating to 16 of the Pomona 18 health indicators were found in 123 of the surveys scrutinized, only nine surveys were identified as having potential to extract data on respondents with intellectual disabilities. Conclusion These findings have implications for those charged with the collection of comparable information about population health.

Within the framework of a study on the ageing process of people with mental handicap in the Netherlands, information about visual and hearing impairments in 1583 people with mental handicap living in group homes or institutions was obtained from their physicians by means of a written questionnaire. Of the people with Down's syndrome (DS) who were older than 50 years of age, 46% had a visual impairment, whereas approximately 13% of subjects with other causes of mental handicap at the same age experienced similar visual impairment. Hearing loss in this age group was reported in 28% of people with DS, but only in 8% of subjects with other causes of mental handicap. The most common eye condition was cataracts, and the most frequent cause of hearing impairment was infection. In people with severe and profound mental handicap of all ages, sensory impairments were more frequent than in persons with mild or moderate mental handicap. Glasses or hearing aids were rarely used by people with severe or profound mental handicap. Assessment of visual and hearing impairments in people with mental handicap seemed clearly indicated, especially in those aged 50 years and older, in those with DS, and in those with severe or profound mental handicap.

Background Since the 1990s, people with intellectual disability (ID) in the Netherlands have been moving from institutions to supported accommodation in the community. The Government is in need of recent data on the numbers of these people, to ensure adequate care provision and funding. This paper reports on the prevalence of people with ID in the Netherlands. The research question was: what is the lowest and highest estimation of prevalence of people with ID in the Netherlands? Methods Two extrapolation methods were used, each consisting of a number of stages, using general practice databases and ID care services records. Results The prevalence of people with ID in the Netherlands was 0.7% (111 750 persons). Other assumptions yielded 0.54–0.64%. Arguments for the two extrapolation methods and the lowest and highest estimation of prevalence are discussed. Conclusions Compared with 1988, there has been a slight decrease in the prevalence of people with ID in the Netherlands, even though we included all age groups and even people with ID of who were not included in ID care services records. By using general practitioner databases it was possible to identify these not registered people with ID.

The objective of this study was to determine the prevalence and incidence of the most frequent chronic health problems in relation to age in people with intellectual disabilities living in residential facilities in the Netherlands. A prospective cohort study was done with four data collections, each with an interval of one year. Data were collected by means of questionnaires which were completed by each person's physician. Striking results included the reported high prevalence and incidence of visual and hearing impairment, which was even more pronounced in people with Down's syndrome than in people with intellectual disability resulting from other causes. Gastrointestinal problems also appeared to have high incidence rates. Dementia was frequently reported in people with Down's syndrome aged 40 years and older. The results reflect the need for a more predictive policy which can anticipate health problems in people with intellectual disability.

Department of General Practice, Maastricht University, Maastricht, the NetherlandsAbstractBackground Current changes in care philosophy and diversity in care arrangements caused the need for a new estimate of the number of people with intellec-tual disability (ID), based on recent data. Previous estimates were based on client registrations, which was thought unreliable at this time. This manuscript studies the question how many people with ID can be found in (part of) the Netherlands.Methods Identification of people with ID through a combination of general practice (GP) data bases and service registrations in the province of Limburg.Results The prevalence of people with ID appeared to be between 0.64% and 0.70%. About 0.21–0.27% were living with family or on their own; 55% of them did not use common ID services.Conclusion Results are based on a combination of identification methods. Thirteen per cent of uncer-tain cases led to minimum and maximum estimates of the population. Limitations of the method and alternative ways of data collection are discussed.Keywords general practice data bases, intellectual disability, prevalence, service registrations

The European Commission's Health Monitoring Programme culminated in the development of a set of European Community Health Indicators (ECHI) for the general population. Despite evidence of marked disparities between the health of people with intellectual disabilities (ID) and their peers in the general population, the ECHI contain no significant reference to people with ID. To address this deficit, a two-year grant from the Health Monitoring Programme was awarded to the Pomona project (a collection of researchers from 13 European countries). The project comprised exchanges of expertise; a critical review of published evidence about health and ID; and consultative processes in member states. The project's finding was that there was no systematic monitoring of the health of people with ID in EU member states and, as a consequence, a set of health indicators specific to people with ID was proposed that could lead to such systemic monitoring.

This report has been prepared by the Ageing Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) in collaboration with the Department of Mental Health and Substance Dependence and the Programme on Ageing and Health, World Health Organization (WHO), Geneva, Switzerland, and all rights are reserved by the above mentioned organization. The document may, however, be freely reviewed, abstracted, reproduced or translated in part, but not for sale or use in conjunction with commercial purposes. It may also be reproduced in full by non-commercial entities for information or for educational purposes with prior permission from WHO/IASSID. The document is likely to be available in other languages also. For more information on this document, please visit the following websites: , and .

Reported here are the preliminary results of the second Dutch National Survey of General Practice in which data were collected on all contacts with general practitioners (GPs) during a 12-month period to determine characteristics of patients with intellectual disabilities (ID). Sociodemographic characteristics differed significantly between people with ID and controls, indicating significant differences in morbidity between the two groups (people with ID were found to have more psychological problems, more digestive problems, more ear problems, more neurological problems, and more general and unspecified problems). (aut.ref.)

Background: Angelman- and Rett-like syndromes share a range of clinical characteristics, including intellectual disability (ID) with or without regression, epilepsy, infantile encephalopathy, postnatal microcephaly, features of autism spectrum disorder, and variable other neurological symptoms. The phenotypic spectrum generally has been well studied in children; however, evolution of the phenotypic spectrum into adulthood has been documented less extensively. To obtain more insight into natural course and prognosis of these syndromes with respect to developmental, medical, and socio-behavioral outcomes, we studied the phenotypes of 9 adult patients who were recently diagnosed with 6 different Angelman- and Rett-like syndromes. Methods: All these patients were ascertained during an ongoing cohort study involving a systematic clinical genetic diagnostic evaluation of over 250, mainly adult patients with ID of unknown etiology. Results: We describe the evolution of the phenotype in adults with EHMT1, TCF4, MECP2, CDKL5, and SCN1A mutations and 22qter deletions and also provide an overview of previously published adult cases with similar diagnoses. Conclusion: These data are highly valuable in adequate management and follow-up of patients with Angelman- and Rett-like syndromes and accurate counseling of their family members. Furthermore, they will contribute to recognition of these syndromes in previously undiagnosed adult patients.

Contains fulltext : 80378.pdf (Publisher’s version ) (Closed access) BACKGROUND: Since the 1990s, individualisation, participation, normalisation and inclusion have been the main principles of care for people with intellectual disability (ID). Autonomy has become an important issue for these people. This review of the literature tried to answer the question: how do people with ID exercise autonomy in relation to health? METHOD: Searches in Cochrane, Medline and PsycINFO were based on the following aspects of autonomy: self-determination, independence, self-regulation and self-realisation. RESULTS: Thirty-nine of 791 articles met our criteria, including 14 on self-determination, seven on independence, 15 on self-regulation and three on self-realisation. CONCLUSIONS: In spite of decades of promoting autonomy, the exercise of autonomy in relation to health has so far rarely been an issue in the literature.

AIM: Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. METHOD: Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio-demographic data, health status, health determinants and health systems. RESULTS: This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. CONCLUSION: The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005-08) to gather information about the health of samples of adults in 14 participating European countries.

Om deze vraag adequaat te beantwoorden, zal eerst worden ingegaan op literatuurgegevens over de fertiliteit van mensen met het syndroom van Down. Vervolgens zal de noodzaak van anticonceptie worden behandeld.

People with intellectual disabilities make up about 1% of the population of Europe. As trends toward community life advance, they have become more visible and more likely to access generic health systems. Yet evidence suggests that there are striking disparities between the health of this group and that of the general population. Increased longevity means that adults in this group expect to live longer lives and thus to encounter age-related risks for various health conditions. The ‘Pomona’ project, funded by the EU Health Monitoring Unit, aims to develop a set of health indicators for people with intellectual disabilities. It will build on the work accomplished by the team developing ECHI – European Community Health Indicators. This article outlines the rationale for the project, key elements in its implementation and expected outcomes.

The aims of this study were to review what is currently known about comorbidity in people with Down's syndrome and to determine if their relative risk for certain disorders was increased. Analysis was carried out on the published literature from 1982 through 1994. In order to be included in this study, articles had to meet predetermined criteria. The strengths and weaknesses of the selected articles were considered in this review. The estimation of relative risks was done by calculating the odds ratio (OR). Odds ratios of > 2 or < 0.5 were found in more than one article for congenital heart defects, hypothyroidism, hearing impairment and hepatitis B. Only one article indicated an OR within this range for all of the following disorders: obesity, epilepsy, degenerative spine disorders and a wide atlanto-axial distance. The results were unclear in the areas of hyperthyroidism, visual disorders, dementia and psychiatric disorders. The concept of comorbidity, i.e. establishing the relationships between the various conditions in one person and understanding the implications for medical care, seems promising, especially for people with intellectual disability. Further work in this area may well improve the quality of care offered to these people.

For policy purposes as well as for the provision of individual care, it is relevant to known which individual characteristics have impact upon the level of care dependence. For purposes of individual care provision, characteristics which can be influenced and which also have an important impact upon the care dependence are of interest. This study showed that the profoundly mentally handicapped are almost all totally dependent upon care, and therefore additional information about individual characteristics is superfluous. The results of logistic regression analyses showed a statistically significant and important impact of ADL-functions. Exactly which other characteristics are relevant to consider depends upon the level of care dependence and the level of mental handicap.

For policy purposes as well as for the provision of individual care, it is relevant to know which individual characteristics have an impact upon the level of care dependence. For policy purposes, it is preferable to predict the level of care dependence as efficiently as possible. This study of residents of institutions and group homes for people with mental handicap showed that profoundly mentally handicapped residents are almost all totally dependent upon care: additional information about the individual characteristics of this group is superfluous. The results of logistic regression analyses for residents with severe or mild mental handicap showed that age, gender and aetiological diagnosis (Down's syndrome or other) do not have significant predictive power. For the level of care dependence, adding the score on Activities of Daily Life (ADL) to the various models improved the predictive power. It depends on the level of mental handicap and on the level of care dependence which one wants to predict which other individual characteristics have to be included in order to improve predictive power.

Background: Health problems are more frequently reported in people with intellectual disabilities (ID) in primary care than in the general population. In this study we aimed to explore the basic health needs in persons with ID in order to promote a more proactive approach to health care in primary care settings. Method: The design was a nested (1:5) case-control study across 100 practices in the Netherlands. 868 persons with ID were matched with 4305 controls (age, gender, practice). Results: People with ID consulted their GP 1.7 times more often than control participants. Among the presented health problems, sleep problems and other complaints which could not be classified as a disease were the most commonly reported. Prescriptions of laxatives as well as medication for treatment of peptic ulcers were significantly higher among persons with ID. These data indicate a high prevalence of problems in basic physical functions such as sleeping, eating and defecation in people with ID. Conclusion: We intend to further explore these health problems and the way they are addressed. Through focus group interviews of people with ID and their carers, general practitioners, practice nurses, specialist physicians for people with ID and care providers, we intend to develop models for tailoring primary health care to the specific and basic needs of persons with ID. The presentation will cover the evidence base to date and discuss our further research plans.

3) University of Maastricht Issue A complex range of co-morbidity, varied aetiology and an increasing evidence base of apparent disparity in health are recognized in people who have an intellectual disability (PWID). This leads to a need to identify appropriate health indicators for this group within the European Union linking to the European Union Health Indicator project, which has established a framework for indicators across the EU. Description of project A European Union funded project has been established to identify health indicators for this population. A combination of literature searching, workgroups and wide consultation across member states has been used to identify health indicators. This paper will describe findings from two workshops of representatives of member states and consultation, outlining a framework for indicators appropriate to this group. Workshop format 1 POMONA European Health Indicators for People with an Intellectual Disability – Professor P.N. Walsh The increasing global concern over disparity in health care for people with an intellectual disability and the recognition of the particular needs of this population led to the establishment of a pan-European project to identify health indicators. This presentation will address the issues in increasing health needs of this population and the structure of the POMONA project 2 Health indicators for people with an intellectual disability – Professor M.P. Kerr This presentation will discuss actual indicators for health in this population comparing the provisional results from the POMONA project with health targets set in the UK and with the public health indicators from the USA. 3 Integration of health indicators: the challenges – Professor M.P. Kerr There exist major challenge to the integration of health indicators into national datasets and into health surveys. The population of people with an intellectual disability exist as an invisible group in current systems. This presentation will explore the key issues, which may have lead to this situation (1) difficulties in classification, (2) difficulties in identification and (3) a lack of positive discrimination in data gathering. Specific problems in data linkage will also be explored. 4 Interactive discussion – Professor P.N. Walsh Lesson learned The development of health indicators in this group will be an important step to assess health care status of PWID across European Member States.

BackgroundThis review gives an overview of studies on speech difficulties in adults with Down syndrome to identify causes and major determinants of poor speech intelligibility for this group and to suggest areas requiring further research.Material and MethodsExactly 39 published articles were selected by using the following MEsH search terms: speech disorders, articulatory apraxia, phonological impairment, articulation disorders, short-term memory, speech articulation disorders, and speech intelligibility. Articles were grouped for analysis based on themes related to underlying causes of speech difficulties and the diagnosis and treatment of speech difficulties. Future research needs are also presented.ResultsSpeech problems in adults with Down syndrome are not clearly defined. There is no specific data on underlying mechanisms that negatively impact on speech and there is no systematic assessment procedure available for evaluating the speech of adults with Down syndrome. Few studies have investigated treatment possibilities for speech disorders in adults and future research is needed into speech difficulties in adults with Down syndrome.ConclusionsResearch is required into therapeutic programs to improve the speech of adults with Down syndrome. One clinical consideration as to why this research is lacking might be that the speech problem is seen as a characteristic of the Down syndrome itself rather than being seen as the result of distinct underlying deficits that may be sensitive to speech therapy. To aid therapeutic program development, longitudinalstudies of adolescents and adults with Down syndrome are required. Special attention could be given to investigating oral-motor characteristics and apraxia of speech.