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Aim: To evaluate the association between physical activity (PA) and sports participation with insulin resistance and non‐alcoholic fatty liver disease (NAFLD) in people with type 1 diabetes (T1D). Methods: People with T1D from a secondary and tertiary care centre were included. Questionnaire‐derived PA was expressed in metabolic equivalent of task hours per week (METh/week). Insulin sensitivity was calculated with the estimated glucose disposal rate (eGDR). NAFLD was assessed by transient elastography (TE). Multivariate linear and logistic regression models were conducted, adjusted for age, sex, diabetes duration and BMI. Results: In total, 254 participants were included (men 56%, age 44 ± 14 years, diabetes duration 24 ± 14 years, median BMI 24.8 kg/m2), of which 150 participants underwent TE. Total PA (median 50.7 METh/week) was not significantly associated with insulin resistance (median eGDR 7.31 mg/kg/min) (beta −0.00, 95% CI −0.01 to 0.00) or with NAFLD (OR 1.00, 95% CI 0.99–1.01). Participating in sports was significantly associated with eGDR (beta 0.94, 95% CI 0.48–1.41) and with NAFLD (OR 0.21, 95% CI 0.08–0.56). Conclusions: In our T1D population, we could not find any dose‐dependent association between PA, insulin resistance and NAFLD. People participating in sports had a lower degree of insulin resistance and lower odds for NAFLD. [ABSTRACT FROM AUTHOR]

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. (Contains 1 figure and 1 table.)

Background: The prevalence of diabetes is relatively high in people with intellectual disability (ID). However, little is known about how people with ID experience having diabetes and how they manage the condition. Method: Seventeen people with mild to moderate ID who have diabetes were interviewed. A framework on illness perceptions having an influence on diabetes self-management was used as a basis for the interviews and for the qualitative analysis. Results: Diabetes is associated with feelings of loss with regard to food intake and choices, and with being controlled. Most respondents did not feel ill. Information about diabetes for people with ID is lacking, but they do have questions. Family members with diabetes often serve as a role model. Diabetes self-management is impeded by a lack of information, motivation and support, few opportunities for learning, and by health factors, mood and living accommodation. Communication between health professionals and people with ID about diabetes rarely takes place. Conclusions: Developing diabetes information together with the people concerned is an important step towards engagement in self-management activities. At the same time, the professional staff in living arrangements should stimulate and support the development of self-management skills in people with diabetes, by providing opportunities to learn and develop. Therefore, the professional staff also need skills and information to be able to support people with ID in building the skills and confidence they need to lead active and fulfilling lives, despite having diabetes.

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-to-face 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.

Background: Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. Methods: An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). Results: Overall, feasibility, internal consistency and face validity of the P15 was acceptable. Conclusions: With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.

Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A retrospective study of medical files of people who died between January 2002 and July 2007. Results: One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end-of-life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision. Conclusion: This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.

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.

Persons with intellectual disabilities (ID) have twice as many health problems than the general public. The author discusses evidence-based research on prevalence and best treatment of primary and secondary health problems in persons with ID. Citing the pan-European Pomona project, European data were collected on training for health professionals regarding health of persons with ID. International cooperation in research and transport of expertise through exchange of students and professionals in this field are recommended.

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.

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.

Background: Current changes in care philosophy and diversity in care arrangements caused the need for a new estimate of the number of people with intellectual 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 uncertain cases led to minimum and maximum estimates of the population. Limitations of the method and alternative ways of data collection are discussed.

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.