Christine Linehan

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Abstract Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

The quality and costs of community-based residential supports and residential campuses for people with severe and complex disabilities

The costs, nature and benefits of residential supports were examined for 20 adults with severe and complex disabilities living in newly built residential campuses and 20 adults living in small community-based dispersed housing schemes. Results indicated that participants living in dispersed housing schemes enjoyed a significantly greater quality of care and quality of life than participants living in residential campuses. The total costs of provision in dispersed housing schemes were significantly greater than the total costs of provision in residential campuses. These differences were accounted for by significantly greater direct staffing costs in the community-based services.

The adaptive behavior scale-residential and community (part I): towards the development of a short form

A potential 24-item short form (SABS) of the 73-item Adaptive Behavior Scale-Residential and Community (Part I) (ABS-RC2; Nihira et al., 1993a, b) was developed, based on data from two diverse UK samples of adults with intellectual disabilities living in residential services (n = 560 and 254). SABS factor and total scores showed good internal reliability in both samples (alpha 0.89-0.98), and were highly correlated with their full ABS-RC2 Part I equivalents (r = 0.97-0.99). Regression equations were calculated for SABS factor and total scores against their full ABS-RC2 Part I equivalents. Levels of agreement between predicted quartile scores (derived from the regression equations) and actual full ABS-RC2 Part I quartile scores were high (kappa 0.75-0.89; percentage agreement 82%-92%). It is concluded that the SABS is a potentially useful research tool, although further work is clearly needed to establish the reliability and cross-cultural validity of the instrument.

Examining the prevalence of epilepsy and delivery of epilepsy care in Ireland

Purpose:  To examine the prevalence of epilepsy and delivery of epilepsy care in Ireland.

The P15 - a multinational assessment battery for collecting data on health indicators relevant to adults with intellectual disabilities.

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.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

OBJECTIVES To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

A qualitative study of carers' and professionals' views on the management of people with intellectual disability and epilepsy: A neglected population

Little attention has been paid to the specific needs of people with intellectual disability and epilepsy despite evidence of increased prevalence of epilepsy, increased risk of complex epilepsy, and heightened use of health services among this group. In an attempt to address this gap, an online international survey was undertaken inviting health professionals and caregivers, both paid and family members, to share their views on the adequacy and quality of available treatment. This paper reports on the responses obtained from 113 individuals from the UK and Ireland. Findings revealed that professionals and carers differ in their expectations of treatment and with regard to maximizing communication during consultations. In addition, findings suggested that the potential of consultations to provide information for carers, as well as to allay concerns, may not be realized. Rescue medications were viewed favorably; however, respondents expressed less satisfaction with routine medications. These findings may reflect a failure by professionals to appropriately transfer knowledge of these treatments.

A White Paper on the medical and social needs of people with epilepsy and intellectual disability: the Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy.

This White Paper builds on the publication of the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) report “Listening for a change—medical and social needs of people with intellectual disability who have epilepsy” (Listening for a change the medical and social needs of people with epilepsy and intellectual disability, ILAE, 2013). The Paper presents an overview of the recommendations of the report, which aim to improve the health and social care of this important population of people with epilepsy worldwide. Actions in four domains are indicated: (1) the development of standards and initiatives that would enhance diagnosis, pathways to investigation, and treatment; (2) the development of guidelines for treatment, specifically best practice in the management of antiepileptic drugs including rescue medication; (3) the development of standards for primary care, multidisciplinary teamwork, and clinical consultations, with emphasis on the need to enhance communication and improve access to information; and (4) the enhancement of links among different stakeholders including medical services, educational establishments, employment services, organizations providing opportunities for social engagement, and family members. The breadth of needs of this population is a challenge to the epilepsy world, spanning all the professional groupings, care providers, and the research modalities in epilepsy.

Active involvement of people with intellectual disabilities in health research - A structured literature review.

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnsteins ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.

Future directions for epidemiology in epilepsy.

Epidemiology continues to be an important research tool in the study of epilepsy and related disorders, providing a better understanding of the frequency, causes and natural history of the disorder. But, beyond risk factors and seizure prognosis, epidemiological studies advance knowledge of many other aspects of epilepsy. Epidemiological studies are being conducted in a new environment in which high quality neuroimaging and fast through-put genomic technologies have become routine tools in clinical diagnosis and therapeutics. Epilepsy is currently understood, not as a single, homogeneous disorder, but a multitude of different clinical syndromes and disease, each with its own cause(s), natural history, and treatment implications. That is why; the comorbidites of epilepsy represent an important area, amenable to study, as they may ultimately have a greater impact on quality of life than epilepsy itself. In this document we share our thoughts on what we think are the future directions for epidemiology in epilepsy.