Exploring views on medical care for people with intellectual disabilities: an international concept mapping study.

BACKGROUND: Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. METHODS: Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance. RESULTS: Participants generated statements that reflect current medical and health care practice, their ideas on good practice, and aspirations for future medical and health care for people with IDD. Based on the sorting of all statements, a concept map was formed, covering 13 aspects that characterize medical and health care for people with IDD across nations. The 13 aspects varied minimally in importance ratings and were grouped into five overarching conceptual themes: (i) active patient role, (ii) provider role, (iii) context of care, (iv) consequences of care for people with IDD, and (v) quality of care. CONCLUSIONS: The themes, clusters and statements identified through this explorative study provide additional content and context for the specific patient group of people with IDD to the dimensions of previous models of medical care.

State of the practice of health information systems: a survey study amongst health care professionals in intellectual disability care.

BACKGROUND: Care for people with an Intellectual Disability (ID) is complex: multiple health care professionals are involved and use different Health Information Systems (HISs) to store medical and daily care information on the same individuals. The objective of this study is to identify the HISs needs of professionals in ID care by addressing the obstacles and challenges they meet in their current HISs. METHODS: We distributed an online questionnaire amongst Dutch ID care professionals via different professional associations and care providers. 328 respondents answered questions on their HISs. An inventory was made of HIS usage purposes, problems, satisfaction and desired features, with and without stratification on type of HIS and care professional. RESULTS: Typical in ID care, two types of HISs are being used that differ with respect to their features and users: Electronic Client Dossiers (ECDs) and Electronic Patient Dossiers (EPDs). In total, the respondents mentioned 52 unique HISs. Groups of care professionals differed in their satisfaction with ECDs only. Both HIS types present users with difficulties related to the specifics of care for people with an ID. Particularly the much needed communication between the many unique HISs was reported a major issue which implies major issues with inter-operability. Other problems seem design-related as well. CONCLUSION: This study can be used to improve current HISs and design new HISs that take ID care professionals requirements into account.

Designing a reference architecture for health information systems.

BACKGROUND: Healthcare relies on health information systems (HISs) to support the care and receive reimbursement for the care provided. Healthcare providers experience many problems with their HISs due to improper architecture design. To support the design of a proper HIS architecture, a reference architecture (RA) can be used that meets the various stakeholder concerns of HISs. Therefore, the objective of this study is to develop and analyze an RA following well-established architecture design methods. METHODS: Domain analysis was performed to scope and model the domain of HISs. For the architecture design, we applied the views and beyond approach and designed the RA's views based on the stakeholders and features from the domain analysis. We evaluated the RA with a case study. RESULTS: We derived the following four architecture views for HISs: The context diagram, decomposition view, layered view, and deployment view. Each view shows the architecture of the HIS from a different angle, suitable for various stakeholders. Based on a Japanese hospital information system study, we applied the RA and derived the application architecture. CONCLUSION: We demonstrated that the methods of the software architecture design community could be used in the healthcare domain effectively and showed the applicability of the RA.

Linking national public services data to estimate the prevalence of intellectual disabilities in The Netherlands: results from an explorative population-based study.

OBJECTIVES: Individuals with intellectual disabilities (ID) depend on public services for daily support and medical care; however, this group of individuals can be difficult to identify within population data. This therefore limits the opportunities to accurately estimate the size of the population with ID, monitor trends and tailor public health interventions according to the needs and characteristics of this group. By linking relevant databases, this study sought to identify individuals with ID in national data, to estimate the prevalence of ID based on public service use and to explore how this method can be used to better monitor the population with ID. STUDY DESIGN: Explorative data linkage study using the Dutch population register and databases from public services accessible with an ID diagnosis. METHODS: The overall prevalence of ID in the Dutch adult population was estimated, specified by age group and sex, and the identified ID groups were also characterised by their support needs. Participants included the entire adult Dutch population who were alive on 1 January 2015. RESULTS: After linking databases, 187,149 adults with ID were identified within a population of almost 12.7 million Dutch adults, giving an ID prevalence estimate of 1.45%. Prevalence of ID was higher among males (1.7%) than females (1.2%). Most individuals with ID were identified through the use of residential care services (n = 91,064; 0.7%). Non-residential ID-related care was used by 27,007 individuals (0.2%). Social, employment or income support due to a (mild) ID was received by 69,078 individuals (0.5%); the mean age in these ID groups was between 8 and 10 years which is younger than that in the general Dutch population. ID prevalence declined with increasing age across all ID subgroups. CONCLUSIONS: The ID prevalence in The Netherlands, as determined by ID-related public service usage, aligns with international estimates. This suggests that national supportive services are accessible and used by individuals with ID. Moreover, this demonstrated that databases from national supportive services can be a useful resource to identify individuals with ID at the population level and can enable structural monitoring of the ID population through linking national databases.

Mapping validity and validation in modelling for interdisciplinary research.

Complex Adaptive Systems (CAS) is an interdisciplinary and dynamic modelling approach for the study of today's global challenges. It is used for the explanation, description, and prediction of behaviours of system components and the system at large. To understand and assess the quality of research in which CAS models are designed and used, a thorough understanding of the meanings of 'validity' from social science research methodology and 'validation' from simulation modelling is needed. In this paper, we first describe the modelling process. Then, we analyse the concepts 'validity' and 'validation' as used in a set of research methodology textbooks and a set of modelling textbooks. We present one single map that integrates validity as characteristic of the model input, the modelling process, model validation, and the validity of the model built. The map is illustrated by means of one example. The terminology proposed in the map allows to describe and distinguish between the validity of primary research used for input in the model, how the quality of the modelling depends on structural and behavioural validation, and, how the assessment of the validity of the model is informed by these types of validation plus research with independent data.

Disparities in cancer-related healthcare among people with intellectual disabilities: A population-based cohort study with health insurance claims data.

BACKGROUND: Concerns have been raised about the accessibility and quality of cancer-related care for people with intellectual disabilities (ID). However, there is limited insight into cancer incidence and the utilization of cancer care at the ID population level to inform targeted cancer control strategies. Therefore, we aimed to examine differences in the utilization of cancer-related care between people with and without ID, identified through diagnostic codes on health insurance claims. METHODS: In a population-based cohort study, Dutch individuals of all ages who received residential care through the Chronic Care Act due to an ID (n = 65 183) and an age and sex-matched sample of persons without ID (1:2 ratio), who were cancer-free at enrollment in 2013 were followed through 2015. Incidence rates (IRs) of newly started cancer care and IR ratios (IRRs) with 95% CIs were used to compare groups. Separate analyses were performed per cancer type. RESULTS: Individuals with ID received less cancer-related care than individuals without (IRR = 0.64, 95% CI 0.62-0.66). Differences increased with age and were larger for females than for males. Utilization of care for cancers within the national screening program (female breast, cervical, and colon cancer) was lower for people with ID compared to people without ID. CONCLUSION: Cancer may be underdiagnosed and/or undertreated in people with ID, or cancer is truly less prevalent in this population. In particular, the differences detected between males and females with ID, and the potential underutilization of national screening programs, require urgent follow-up investigations.

A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co-researchers with intellectual disabilities.

BACKGROUND: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. METHOD: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. RESULTS: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. CONCLUSIONS: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care.

BACKGROUND: Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population. METHOD: Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20-65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability. RESULTS: Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively). CONCLUSIONS: Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.

Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability.

BACKGROUND: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales. METHODS: In an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations. RESULTS: Main adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well. CONCLUSIONS: This study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study's results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.

Research design: the methodology for interdisciplinary research framework.

Many of today's global scientific challenges require the joint involvement of researchers from different disciplinary backgrounds (social sciences, environmental sciences, climatology, medicine, etc.). Such interdisciplinary research teams face many challenges resulting from differences in training and scientific culture. Interdisciplinary education programs are required to train truly interdisciplinary scientists with respect to the critical factor skills and competences. For that purpose this paper presents the Methodology for Interdisciplinary Research (MIR) framework. The MIR framework was developed to help cross disciplinary borders, especially those between the natural sciences and the social sciences. The framework has been specifically constructed to facilitate the design of interdisciplinary scientific research, and can be applied in an educational program, as a reference for monitoring the phases of interdisciplinary research, and as a tool to design such research in a process approach. It is suitable for research projects of different sizes and levels of complexity, and it allows for a range of methods' combinations (case study, mixed methods, etc.). The different phases of designing interdisciplinary research in the MIR framework are described and illustrated by real-life applications in teaching and research. We further discuss the framework's utility in research design in landscape architecture, mixed methods research, and provide an outlook to the framework's potential in inclusive interdisciplinary research, and last but not least, research integrity.

Does risk and urgency of requested out-of-hours general practitioners care differ for people with intellectual disabilities in residential settings compared with the general population in the Netherlands? A cross-sectional routine data-based study.

OBJECTIVES: To investigate whether people with intellectual disabilities (ID) in residential setting were more likely than people from the general population to request out-of-hours general practitioner (GP) care and whether these requests had a similar level of urgency. DESIGN: Cross-sectional routine data-based study. SETTING: Two GP cooperatives providing out-of-hours primary care in an area in the Netherlands. POPULATION: 432 582 persons living in the out-of-hours service areas, of which 1448 could be identified as having an ID. MAIN OUTCOME MEASURES: GP cooperative records of all contacts in 2014 for people with and without ID were used to calculate the relative risk of requesting care and the associated level of urgency. RESULTS: Of the people with ID (448/1448), 30.9% requested out-of-hours GP care, whereas for the general population this was 18.4% (79 206/431 134), resulting in a relative risk of 1.7 (95% CI 1.6 to 1.8). We found a different distribution of urgency level for people with and without ID. Generally, requests for people with ID were rated as less urgent. CONCLUSION: People with ID in residential setting were more likely to request out-of-hours GP care than the general population. The distribution of the urgency level of requests differed between the two groups. The high percentage of demands relating to people with ID requesting counselling and advice suggests that some out-of-hours GP care may be avoidable. However, more insight is needed into the nature of out-of-hours primary care requests of people with ID to direct structural and reasonable adjustments towards the improvement of health information exchange in and around-the-clock access to primary care for people with ID.

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study.

OBJECTIVE: Accurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice. METHODS: We conducted a two-round modified Delphi study with Dutch GPs (n=22), support workers (n=18) and ID physicians (n=20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility. RESULTS: Agreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands. CONCLUSION AND PRACTICE IMPLICATIONS: This study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group.

Meet meat: An explorative study on meat and cultured meat as seen by Chinese, Ethiopians and Dutch.

In this cross-cultural study we investigated how study participants from China, Ethiopia and the Netherlands operationalize the concept of meat and to what extent cultured meat fits or does not fit into this operationalization. We argue that combining the conceptual approaches symbolic boundaries and theory of social practices helps to better understand the possibly culturally dependent operationalization of the concept meat. Ten visiting graduate students from China, 10 from Ethiopia and 10 native Dutch graduate students completed freelist tasks, a pile sort task, interview and essay task, during a single session. We found that butchered animals are at the center of the concept of meat, although depending on culture not all animals are a source of meat. Symbolic boundaries were restricted or stretched depending on social practices within countries. Ethiopian participants applied strictly defined symbolic boundaries, where Chinese and Dutch participants used more broadly defined symbolic boundaries. Cultured meat was seen as a technology for the future and was positioned across the symbolic boundaries of meat.

Explicit and implicit attitude toward an emerging food technology: The case of cultured meat.

Cultured meat is an unfamiliar emerging food technology that could provide a near endless supply of high quality protein with a relatively small ecological footprint. To understand consumer acceptance of cultured meat, this study investigated the influence of information provision on the explicit and implicit attitude toward cultured meat. Three experiments were conducted using a Solomon four-group design to rule out pretest sensitization effects. The first experiment (N = 190) showed that positive or negative information about cultured meat changed the explicit attitude in the direction of the information. This effect was smaller for participants who were more familiar with cultured meat. In the second experiment (N = 194) positive information was provided about solar panels, an attitude object belonging to the same sustainable product category as sustainable food products such as cultured meat. Positive information about solar panels was found to change the explicit attitude in the direction of the information. Using mood induction, the third experiment (N = 192) ruled out the alternative explanation that explicit attitude change in experiment 1 and 2 was caused by content free affect rather than category based inferences. The implicit attitude appeared insensitive to both information or mood state in all three experiments. These findings show that the explicit attitude toward cultured meat can be influenced by information about the sustainability of cultured meat and information about a positively perceived sustainable product. This effect was shown to be content based rather than merely affect based. Content based information in a relevant context could therefore contribute to the commercial success of cultured meat.

The Other Side of Rapport: Data Collection Mode and Interviewer Gender Effects on Sexual Health Reporting in Ghana.

Accurate data on young people's sexual behaviour and sexual health practice is essential to inform effective interventions and policy. However, little empirical evidence exists to support methodological design decisions in projects assessing young people's sexual health, especially in African contexts. This short report uses original empirical data collected in Ghana in 2012 to assess the effects of data collection mode and interviewer gender on young people's reporting of sexual health and access to supportive sexual health resources. The findings indicate that the effect of data collection mode may vary by gender, and there is no indication of an interviewer gender effect for males in this study. Preliminary results suggest that building strong rapport with research participants in this context may lead to reduced sexual health data quality. These findings merit further investigation and have direct implications for the design of projects measuring sexual health and related variables in Ghana.

Psychometric properties of the OLQ-13 scale to measure Sense of Coherence in a community-dwelling older population.

BACKGROUND: With the ongoing demographic shift, the quality of life and health promotion among older individuals are becoming increasingly important. Recent research suggests that Sense of Coherence positively affects quality of life. Hence, a valid and reliable measurement of Sense of Coherence is pivotal. The 13-item Orientation to Life Questionnaire (OLQ-13) can be used to measure Sense of Coherence. The purpose of the present study is to assess the psychometric properties, validity, and reliability, of the OLQ-13 in community-dwelling individuals, aged 65 and older. METHODS: The OLQ-13 scale was administered as part of a healthy aging project for non-institutionalized people aged 65 years and older. Internal consistency and reliability were assessed by means of inter-item and test-halves correlations and Cronbach's alpha. Construct validity was explored using cluster analysis and exploratory factor analysis (n = 703) and tested using confirmatory factor analysis on a separate subset of individuals (n = 658). Item face validity was investigated by means of 12 semi-structured interviews. RESULTS: The reliability and the validity of the OLQ-13 in this population of non-institutionalized individuals aged 65 years and older was ambiguous, at least partly due to the poor performance of two items (b and d), which was confirmed by results from the qualitative part of this study. The psychometric properties of the proposed OLQ-11, obtained by deleting the two items, were better. In particular, the interpretation of exploratory factor solution improved. Whereas the underlying theoretical constructs could not be linked to the exploratory analyses of OLQ-13, this was to some extent possible in OLQ-11. The superior validity of OLQ-11 over OLQ-13 was supported by the better model fit in the confirmatory factor analysis. CONCLUSIONS: The present mixed-method study suggests the proposed OLQ-11 as a more suitable instrument for measuring Sense of Coherence than the OLQ-13 in a population of ageing individuals. This study confirms that the validity and reliability of OLQ-13 may differ substantially in different populations.

Co-morbidity and patterns of care in stimulant-treated children with ADHD in the Netherlands.

This study aimed at investigating the use of psychosocial interventions and psychotropic co-medication among stimulant-treated children with attention-deficit hyperactivity disorder (ADHD) in relation to the presence of psychiatric co-morbidity. Stimulant users younger than 16 years were identified in 115 pharmacies and a questionnaire was sent to their stimulant prescribing physician. Of 773 questionnaires sent out, 556 were returned and were suitable for analysis (72%). The results are based on 510 questionnaires concerning stimulant-treated children for whom a diagnosis of ADHD was reported. Of the 510 children diagnosed with ADHD, 31% had also received one or more other psychiatric diagnoses, mainly pervasive developmental disorder or oppositional defiant disorder/conduct disorder. We found an association between the presence of co-morbidity and the use of psychosocial interventions for the child (P < 0.001) and the parents (P < 0.001). In the ADHD-only group, 26% did not receive any form of additional interventions, while psychosocial interventions varied from 8 to 18% in children with ADHD and psychiatric co-morbidity. The presence of diagnostic co-morbidity was also associated with the use of psychotropic co-medication (overall, P = 0.012) and antipsychotics (P < 0.001). Stimulant-treated youths with ADHD and psychiatric co-morbidity received more psychosocial interventions and psychotropic co-medication than children with ADHD-only. The type of psychosocial interventions and psychotropic co-medication received by the children and their parents, depended on the specific co-morbid psychiatric disorder being present.

Current issues around the pharmacotherapy of ADHD in children and adults.

BACKGROUND: New drugs and new formulations enter the growing market for ADHD medication. The growing awareness of possible persistence of ADHD impairment beyond childhood and adolescence resulting in increased pharmacotherapy of ADHD in adults, is also a good reason for making an inventory of the what is generally known about pharmacotherapy in ADHD. AIM: To discuss current issues in the possible pharmacotherapy treatment of ADHD in children, adolescents and adults with respect to the position of pharmacotherapy in ADHD treatment guidelines, the pharmacoepidemiological trends, and current concerns about the drugs used. METHODS: A search of the literature with an emphasis on the position of pharmacotherapy in ADHD treatment guidelines, the pharmacoepidemiological trends, and current concerns about the drugs used in pharmacotherapy. RESULTS: According to the guidelines, the treatment of ADHD in children consists of psychosocial interventions in combination with pharmacotherapy when needed. Stimulants are the first-choice drugs in the pharmacological treatment of ADHD in children despite a number of well known and frequently reported side effects like sleep disorders and loss of appetite. With regard to the treatment of adults, stimulant treatment was recommended as the first-choice pharmacotherapy in the single guideline available. Both in children and adults, there appears to be an additional though limited role for the nonadrenergic drug atomoxetine. The increase of ADHD medication use, in children, adolescents and in adults, can not only be interpreted as a sign of overdiagnosis of ADHD. Despite the frequent use of stimulants, there is still a lack of clarity on the effects of long-term use on growth and nutritional status of children. Cardiovascular effects of both stimulants and atomoxetine are rare but can be severe. The literature suggests that atomoxetine may be associated with suicidal ideation in children. CONCLUSION: Although pharmacotherapy is increasing common in the treatment of ADHD in both children and adults, there are still a lot of questions about side effects and how best to counter them. This suggests an important role for close monitoring of children and adults treated with stimulants or atomoxetine.

Longitudinal changes in GPs' task perceptions, self-efficacy, barriers and practices of nutrition education and treatment of overweight.

BACKGROUND: GPs play a role in prevention by giving nutrition education and advice on overweight. Over the years, GP's tasks and working environment changed. OBJECTIVE: To know how task perceptions, perceptions of own ability and perceived barriers regarding nutrition education and treatment of overweight of Dutch GPs have developed from 1992 to 2007. METHODS: In all, 488 GPs, first included in study in 1992, were asked in 2007 to return the Wageningen PCPs Nutritional Practices Questionnaire. Crohnbach's alphas and sum scores were calculated and differences between 1992 and 2007 were investigated using a paired t-test. RESULTS: In all, 247 GPs responded (51%). 'Noticing patients overweight and guidance of treatment' did not change in GPs from 1992 to 2007. The task perception about health education and prevention did not change and the perception of daily activities shifted from the curative to the preventive side. Interest in the influence of nutrition on health increased in 2007. GPs less often managed to counsel on nutrition in daily practice. Their perceived capacity to counsel and their self-efficacy regarding overweight management declined over the years. In 2007, more GPs perceived the barriers 'lack of time' to treat overweight and to give nutrition education. The most important barrier in 2007 was lack of patient motivation. CONCLUSIONS: The GPs perceived overweight and nutrition education as important and were still favourable towards prevention. However, their potential to give nutrition education or guide in treatment of overweight was not fully utilized because of decreased self-efficacy factors and perceived barriers.